Adventures with Autism – the kindness of a stranger

This week has been rough. Heck more than this week has been rough but this week has been over the top one for the books rough. Summer is tough for Tedy because he’s thrown way off his schedule and it’s tough to get a good routine going. We try to do as much as possible to keep things moving and to enjoy the break but it isn’t easy. This week has been full of doctors appointments. Some for the little boys and then a specialist appointment to pediatric neurology for Tedy. We’ve been hiking a ton and our last hike didn’t end so well and we took a trip to the ER because Tedy fell and gashed open his knee/leg. Luckily he only needed it to be cleaned out a bit more then glued and bandaged up. I’m thankful he didn’t need stitches because keeping a bandage on this kid and no pool for a week is rough enough.

Anyways, today has sucked! Tedy’s in pain from his cut and has been fussy. Then I was also attacked on Facebook for a misunderstood post about our park visits and #finishMS. We had to go to the clinic again today to pick up Tedy’s new medications prescribed by the neurologist and he just wasn’t having it. He went into full blown meltdown mode. He pulled at another kids hair [I apologized to the kid and to his parents] so I had to redirect Tedy so he wouldn’t harm others. I got him to calm down some by taking a drink from the water fountain but that was short lived and he began to bang his head on the wall, on the floor, etc. I had to keep redirecting him and it is so tough to not break down crying myself at those times.

The pharmacy was great and I knew they bumped us up in line and worked as fast as they could to get us out of there and I am super thankful for that. When I got out to the van I saw this note on my windshield. At first I was like crap now what?! As I read it the tears began to fall. This woman has no idea how much this simple note means to me. I am so used to getting looks and hateful comments when Tedy has a meltdown in public but this other mama recognized and wanted to make sure I knew I wasn’t alone.

To all the mom’s / dad’s / caregivers of special needs children always remember that you are not alone.

To other bystanders please take note and spread kindness when you can. Kindness makes a huge difference in a person’s life. It’s so easy to be judgemental especially when you see only a snippet of the story. Yet kindness – it does a world of wonder for you and especially for the person who is already having a tough time.

To the woman who wrote this note – maybe you’ll see this, maybe you won’t either way – thank you.

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A letter to Audie on his 2nd Birthday

Audie,

Baby Cinco es DOS!! FELIZ CUMPLEANOS!!

You may be the baby of the family but you try your best to keep up with the big kids.

I love watching you grow and transform from baby to toddler.

You’re a true little gentleman and you love helping out around the house. You will put away your dishes, throw away trash and help pick up dog poop in the yard.

You love to go hiking and to point out all the critters in the woods. You’re a bit timid in the water but are slowly improving so long as mama or daddy are holding you.

You’re happy as can be and bring joy to my life daily.

We love you Papasito!!

A letter to Mikey on his Golden Birthday

Mikey,

I can’t believe my little firework is four years old already! Happy Golden Birthday!!!!

Four years ago on a crummy weather night your dad wisely forced me to go to the hospital and BAM about 9 minutes later you burst into our world! The poor hospital staff could barely get it together before you arrived.

You’ve grown so much this past year and it’s been amazing to watch! You’re my favorite character Mikey – from Woody to Maui, Minion, Dash, Spiderman, Batman or whatever your heart desires.

Your shy dimple smile melts my heart. You’re getting braver and braver at the pool. In the fall you’ll start school!

May the fireworks always burst for you and may you know how loved you are.

Happy 4th Birthday!!!!

A letter to Cecilia on her 6th Birthday

Dearest Cecilia,

Happy 6th Birthday!!!!!!

I can’t believe it’s been 6 years already! 6 years since you decided to burst into my world. Since day one you have taken me by surprise. Over and over since that day you’ve taught me a valuable lesson about time. You do things in your own time and in your own way and it’s amazing. By everyone else’s terms you’re perpetually late. You were a week late “due date” wise, you walked late, talked late, potty trained late, etc. Yet you’re not late at all, you’re just on time for you.

You love all colors. Do you know you’re a rainbow baby? You are the bright promising rainbow after a challenging storm of loss.

You love all magical creatures. You believe in fairies. You know that white horses are really unicorns and only some people have the ability to see their magical horn – you’re one of those people. I pray that you never lose your sense of wonder for the magic that’s around you.

You love flowers. Where some see weeds you see a wish. You love listening to the birds and all of nature around you. You can sense when a storm is coming.

You love deeply and fiercely. You are fiesty. You are protective of your family; you stand up for them and to them. Your heart is genuine and I love your brutal honesty.

You know that God is real. You often have deep theological questions and answers. You truly have faith like a child and I pray you never lose it.

Never let anyone dull your sparkle Ceci.

I love you, Happy Birthday.

Love,

Liz

(aka Mom but you prefer to call me Liz)

The end of an era…

Last week my beloved BOB double jog stroller finally kicked the bucket.  Honestly I didn’t think this thing would ever truly die but alas it did and of course I was wearing my Chaos Coordinator shirt when it happened.

I was fortunate to be with someone while running and to not be too far from where the van was parked.  It was also luck (or divine mercy) that the boys managed to not be harmed when the stroller broke down.  My new running partner (yes I’m dating again – I’ll have to write more about that another day – dating as in finding new people to run with) carried Audie and I took Mikey and the stroller stayed tucked behind a tree on the trail until I drove back to pick it up.  The axle of the front wheel was so bent that there’s simply no way to get it out without taking a hack saw to it – not even sure if that would work because of the bolts – anyways y’all this thing got so bent jacked up!  After examining it a bit more Troy determined that when the wheel popped off the first time one of the springs must have gone off as well and since I hadn’t realized that when it happened a second time that’s what did the stroller in.  We decided that we weren’t going to take it to the bike shop to be repaired because of some damages to the front fork as well.  Plus the stroller has already needed two rear tire springs as well as canopy bolts.  All of these are specialty parts that we would have to get hopefully through the bike shop.  Yet again, it just wasn’t worth it to us at this point.  You see, we’ve had this stroller for over 8 years and after around 5,000 miles I lost track of the mileage on this stroller.  We guesstimate that it’s probably has somewhere around 6,000 miles on it.  That’s a solid amount of miles over the years.  When my mom got me this stroller as a gift 8+ years ago I would’ve never imagined that I would have it this long and that it would’ve seen so many miles!

The stroller still sits in the garage though, I don’t have the heart to get rid of it just yet.  Troy will probably have to put it out on the curb for me.  This stroller has been one of the few things that every single one of my kids have used!

Tedy & Phia

Sophia – She had  just turned 2 when we got the stroller.  She was not a fan; heck she was never a fan of any stroller.  Back in the days before ipads and smart phones I would pile in books, snacks and other little toys for her when we would run.  I knew where all the bathrooms were in Colonial Williamsburg and everything in between where we lived (in the Jamestown part of the burg) and where the Child Development Center was (in CW) which was about a 6 mile route.  20130105-212816.jpg

Tedy – He probably spent the most miles out of all the kiddos in this stroller.  He was just an itty-bitty baby when I first started using it; I had a car seat adapter back then.  When I stopped working I would often run with both Sophia and Tedy from our house to the Child Development Center.  I did it as part of my marathon training but also because there were many weeks when I simply couldn’t afford to fill the car with gas.  When I stopped working it was a huge sacrifice and we very much lived pay check to pay check in those days.  I am forever thankful to my mom for paying for Sophia’s child care back then so that she could still be a part of something while Troy was gone.  After we dropped Sophia off at “school” Tedy and I would attend various story times at the library or Barnes & Nobel and often meet up with friends for play dates.  I would usually pack myself a lunch and refill my CW mug around town.  We would often spend the entire day wandering around CW while we waited for Sophia and then we would run back home.

20140417-191101.jpgCeci – Tedy & Ceci were my best stroller running duo.  They both loved being in the jog stroller and once Ceci could talk she became my personal cheerleader and would often shout at me to “run faster!”  When Sophia was Pre-K we would often run to pick Sophia up from school and then I would wear Ceci on my back and Sophia would sit and we would walk back.  That route wasn’t nearly as far as the CW days but I could make a nice long run out of the route from our house to the school by going up and down each road between the two points.

IMG_20170224_102707.jpgMikey – Oh boy, this kid HATED the jog stroller as a baby!  For the entire first year of his life he would fuss and fuss and fuss and I would often have to take him out and nurse him for a bit to convince him to get back in or I would have to keep the baby carrier on me and wear him and walk to get some miles in.  Close to 18 months he finally stopped fussing and started to enjoy our runs and would often use it as his nap time (he still does).  Mikey’s biggest thing though is for us to go to a playground or Dunks after a run.  So in a way he still has to be bribed to go run haha.  He’s my kid that knows all the routes along a run and sometimes when I try to add-on some mileage by going the long way around to the playground he will tell me no mama that’s not the way.  I’ve learned to go to the playground first and then after get more miles in as he takes a nap.

IMG_20180123_131707.jpgAudie – Baby Cinco has had his moments of fussiness in the stroller as well.  If we meet up for an early run he often glares at other people.  I say he hasn’t had his morning coffee yet – haha that’s the type of look he gives.  If looks could kill Audie would’ve pierced many people with the daggers he throws.  All in all though he enjoys the ride and will often use it as nap time as well.

This stroller saw 5 kids, 4 pregnancies (1 miscarriage), multiple states, training for 1 ultra-marathon, 5 marathons, a dozen or so half-marathons, a few 10Ks and countless 5Ks…6,000ish miles.  This stroller helped me through when Troy was gone.  This stroller allowed for some good naps when my kids wouldn’t nap otherwise.  It allowed me to see some beautiful sites all around.  From the Blue Bonnets of Texas to the Cherry Blossoms of Virginia.  We crossed paths with anything from Alligators to Deer. 

One of the biggest excuses I hear about why people don’t run is because they have kids.  I really try to meet people where they’re at but since this double jog stroller has been such a saving grace for me over the years I have a hard time with this one.  I also have a hard time with the oh my kids have to nap or my kids _______ insert whatever excuse here.  I get it, I do, and not every run or walk goes according to plan for me but unless you keep trying then you’ll never truly know.  So I encourage you mama’s to get out there, invest in a jog stroller, it doesn’t have to be a crazy expensive one like mine was (though I will say that it was completely worth every single penny) and get moving.  Your kids see what you’re doing too.  They see you being active and it instills a lifetime of, being active is what we do, in them.

To my Double BOB – thank you for all the miles and memories over the years, you will be truly missed but you have been replaced.  I now have an in-step double stroller/trailer.  My goals are adjusting to the new equipment because we live in the Active Duty Army world and having 5 kids and a husband constantly gone means goals adjust.  I feel like I need a name for my new stroller though…hhmmm… anyways, it’ll never truly replace my Double BOB, that’s just not possible but here’s to the end of an era and the start of a new one.

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Adventures with Autism – being Catholic

It’s spring and friends are posting gorgeous pictures of their sons and daughters receiving First Communion. They’re all so adorable. I remember when they were all itty bitty babies and when some of us would have play dates together. I remember how even back then Tedy didn’t really interact with his peer babies but they were babies so really it didn’t matter to me back then.

I’m truly happy for my friends and for their children but a piece of my heart aches. The tears flow as I realize that yet another regular kid milestone has come and gone for my son.

I mourn another part of his life and wonder if he will ever be in communion with the church. If he does truly understand any of church. I wonder if he believes in God. It is so difficult to raise a special needs child in the Catholic faith.

We have had some terrible past experiences and have literally been asked to leave during mass. Don’t believe me? Ask my dad he was there with me when it happened once in the days before we even knew Tedy truly had autism. It crushed me. It has continually been a struggle to go to church. It has weighed so heavily on my heart.

We kept searching for a church that would accept our hot mess express family. After so many years of feeling left out we finally found a great church in San Antonio; The Shrine of Saint Padre Pio Catholic Church was the first time I genuinely felt my family was accepted. Yet then of course it was time to move because we are an active duty army family and we move every few years.

I was so nervous about having to start all over and to find a new church. It weighed so incredibly heavy on my heart that I broke down in the confessional when we first got to Fort Bragg. Yet the priest reassured me that Tedy is welcome in the Catholic community. He reassured me that Tedy knows God in his own way. He reassured me to keep coming to Mass and that it would all be okay. He helped me to let go of so much Catholic guilt that I had been feeling [confession will help you like that].

Yet the devil still creeps into my life. The devil gets personal. The devil tries to make me envious of my friends and their kids celebrating First Communion. The devil won’t win this one though because we have been blessed by being a part of the Saint Michael the Archangel Catholic Community here at Fort Bragg. I am thankful for this community. We are genuinely welcome. We can comfortably go to church and not worry about being stared down and asked to leave because Tedy makes a noise. The community is vibrant. It is full of families, of children who don’t always sit still and stay quiet for the full service. Not every community is this way though. When a community isn’t welcoming it’s easy for the devil to win.

I challenge you if you’re a regular church goer take note, what do you see? How do you react? How can you make your community more accepting of others?

I encourage you if you’re a parent of a special needs kid and have fallen away from the church, don’t lose faith, keep calm and say a Hail Mary and get back out there.

Maybe one day I will be able to post a First Communion picture of Tedy.

People of other religions or versions of christianity please don’t ask me to leave my church [yes this has happened on numerous occasions]. I love my church. I truly do. I love my religion and being Catholic. Yes I wrestle with God but that’s ok – I feel like it’s part of how we grow in our faith.

Pray for me. Pray for Tedy. Or if you aren’t the praying type send out good vibes, etc that as we close out April, the final day of Autism Awareness and Acceptance month that some hearts have been changed; that people were truly made aware and that people continue to accept others who are a bit different.

Moving in the now…

I really struggled this morning. I woke up with terrible vertigo and missed the wear blue run. Fortunately after a solid chunk of extra rest thanks to Troy the day got better. He held me accountable and took the kids to the playground and basically forced me to go for the 8 miles that was on my training calendar today.

He was my support in so many ways today. He let me rest when I needed to and then kept me accountable when I needed that.

My run was not easy. Everything was not all better. It was physically painful. Then it became emotional.

It made me reflect on some past issues and think about upcoming doctors appointments. Appointments that I’ve honestly been avoiding and yet again Troy has kept me accountable there and expressed his concern for me and that I need to go. When I was in highschool and on a trip with my BFFs family her mom noticed some moles on my back. My mom took me to the doc and then to the dermatologist and it was determined that those moles needed to be removed. The surgery itself went fine but in those sorts of surgeries they tend to take more than needed to make sure they have everything. Though the biopsies came back fine I was cautioned that it is something I need to continually keep an eye out for and I’ve had a couple other surgeries to remove moles since. Back to those high school days, not too long after the surgery I started to suffer from severe back spasms. It’s since been determined that a nerve was likely damaged during that surgery. Fast forward to today and we’re trying to figure out the extent of the damage done or if there’s another underlying cause to the numbness I experience on an all too regular basis now.

I honestly have been avoiding making these appointments. I’m nervous. I manage with the pains I have but it’s gotten to the point where I can’t really manage anymore. The uncertainty of when vertigo will hit me or when I drop something because I’ve lost feeling in my hand is concerning to me and I’ve been lucky that I’ve been in safe environments during most of these instances. Really I’m afraid any results from these appointments will mess with plans I have coming up.

As I thought about all of this and cried during my run today I reminded myself that I’m out now. I’m moving now. I’m doing this now. I can’t change the past and I can’t predict the future. I can learn from the past and use that knowledge in the future. I can enjoy the now and the beauty all around me.

I am moving in the now. I am surrounded by a virtual community of women through Skirt Sports and the Real Women Move group. I know these ladies will be supportive in this latest journey down an uncertain path and I am extremely grateful for them.

So if you’re out there struggling just know you’re not alone. We all struggle in our own ways. Move in your now how you can and be proud of your movements no matter what they are because sometimes we can’t move and that’s ok too. Sometimes we will have bad days and that’s ok but on those good days and in those good moments file away those beautiful times to use as light during your darkness.