Please keep your cape. I don’t want it.

I read one of those special needs articles the other day that told me I was a superhero because of how “difficult” certain aspects of my life supposedly are. I also read another one after that, which compared my life to running a marathon 24/7. Guys that’s a lot of miles and I get out of breath walking up the stairs too fast. I’ve read so many articles like these by now that you would think it would stop eliciting a response, but on that particular day I hadn’t showered, not because my son with special needs wouldn’t let me, but because I DIDN’T WANT TO. I forgot to return not one, but two time- sensitive emails, not because I was so busy caring for my son. I SIMPLY FORGOT. I had also eaten a king size package of twizzlers, nope not because my son’s disability makes me want to emotionally eat, but because I WANTED TO and I lack twizzler willpower.

I also read another piece that said when God was asked what Patron saint the mom of the child with special needs would get, He replied, “A mirror will suffice.” I’m sorry, I laughed really, really, really hard at that one. Unless there is a Patron Saint of Twizzler eating that is not a term that should ever describe me. Oh and I’ve heard, God only gives special children to special people, so many times it actually makes me visibly cringe. And the same goes for, “I don’t know how you do it.”

So basically I’m a superhero, I’m special, a marathon runner and I’m a patron saint you guys! All because I gave birth and love my son. Ok I know I’m sounding a little bitter. And I know that people really do mean well. And I know that these are supposed to be compliments. And some compliments I love and cherish! Who doesn’t love hearing you’re a great Mom or your son is amazing. Or you’re doing a really great job. I appreciate compliments that relate to me as a mother, a person, or the work I am doing. Just not compliments that are associated with my son having a disability.

Try to think of it from my son’s point of view or any person with a disability. I’m considered extra special, a superhero, even a fricking Saint because having a child with a disability is so hard. How would a child or an adult feel to hear that they are so hard? That their parents must have superpowers in order to be able to parent them. That would feel like crap. And it’s not true.

If you had a child with a disability more likely than not you would do the same things I have. Love him/her with your whole heart and go to the ends of the earth to make sure they get the care and services they need. You do that because he’s your child. And because love is boundless. It has nothing to do with his/her disability.

I’m not sugar coating anything. Yes there are aspects of my life that are incredibly hard and I’ve wrote about them. I think it’s damn important to do what you need to do to stay sane. Vent to a close friend, paint, exercise, write, see a therapist, get on medication if needed, whatever you need to do, because yes there are moments when you will fall to your knees and you will have no idea how to get back up. Watching my child struggle to make friends, watching him work one hundred times harder than his peers to write his name, zip up a zipper, say how he feels. Yup pretty damn heartbreaking. Surgeries? The scariest times of my life multiplied by a million. The uncertainty about the future? Steals way too many nights of sleep.

I believe that pain, sadness, heartbreak are relative. Is my life harder than yours? No. And God help me if I start going around comparing how hard my life is with others. You have felt deep, indescribable pain and you might not have a child with a disability. Or you might and that pain may have had nothing to do with them. And my pain is not any more justified than yours. It’s pain. It sucks. For everyone.

Have I secretly rolled my eyes over Mom’s complaining that little Jonny won’t eat vegetables or Susie regressed in potty training or Timmy didn’t get to start at quarterback? I have and I have thought, “what I would give for those to be my worries.” But taking a trip down pity party lane only ends up with me filled with debilitating anxiety, so I’m pretty quick to nip those thoughts in the butt and remember how damn beautiful my life is.

There is no pedestal I want to be on. I am not a super hero. I am not a saint, I am not a marathon runner. I hate running! And I am not any more special of a parent than you are. Painting me or any other parent of a child with a diagnosis in that light increases the very ableism we should be working so hard to eliminate.

I will always and forever be grateful to those who try to understand our lives. Who want to help. Who include us. Who are there for me when I am broken. And of course I love those who briefly consider me to be a superhero, but I’d much rather be seen and loved for who I am. A fallible Mom, a child of God, just like you, who loves her kids and is just trying to do her best everyday.image

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Noah is 11. How did this happen so fast?!

Noah is 11. Sigh. It’s all gone so incredibly fast. Some of its a blur and some of its crystal clear.  And all of it creates this pretty amazing life we have together.

I remember after he was born, finally being able to take him home after a long hospital stay, terrified to my core and wanting to take all the machines with me that would tell me he was ok.  I remember as he got older waking up to his voice saying, Mamamamamamamama over and over again and walking into his room to his whole face and body lit up with happiness at seeing me. I remember dancing with him in my arms until he fell asleep. I remember how he would toddle up to every person he saw, stranger or friend and say, “hug, hug” and all would comply and everyone would leave a little happier and lighter afterwards. I remember his first slide and how his obsession with parks started and never ended. I remember his first time seeing a puffin and how he giggled uncontrollably while he watched it dive and shake it’s feathers and fly.  I remember when he pronounced Obama, Omama.

And today I am still keeping track of all those little memories that stay with you a lifetime. If Noah spots a dog and its owner it does not  matter how far away they are he will instantly start saying, “um excuse me, um excuse me, can I pet your dog?” Noah loves Amazon like his Mama and will ask “Is it on Prime” on the regular. He uses the following words and phrases frequently and almost always accurately: you never know, actually and by the way. My favorite is, “I love you by the way.” And that is almost always followed with, “How much do you love me?” While he no longer asks everyone for hugs (I’m going to view that as a positive) he continues to engage nearly everyone in conversation. “Hi there, guess what?  I have a dog named Brody. Do you have a dog?” Or my most recent favorite at WinCo, “Hi there, guess what? They have giant pieces of chocolate in the bins. You need to go get some.”

He continues to be very concrete in his thinking and says exactly what is on his mind, which can create some interesting conversation topics and very quick subject changes by Mom and Dad😂. “Hi, you are old and going to die soon.”  Yup that happened.

Noah is so kind and loving. He continues to have no idea that anyone in the world would ever be mean. This has caused me many sleepless nights where I worry about the future and how others will treat him. But more than anything it helps me to also view the world through lenses that see the best in everything and everyone.

The breadth of Noah’s love and influence is vast. I have had so many people tell me the different ways that Noah has touched their lives and lightened their load. And sweet Noah has no idea. He is simply living and being himself and changing lives in the process. And that speaks volumes.

Happy 11th Birthday Noah bug. I’m so lucky to be your Mama.

*Per tradition we had our usual close family party on his actual birthday and then his friend/extended family party the following Saturday. Yep, I know I go all out for birthday parties and yup, to some I know it seems excessive, and nope I’m not going to change. I LOVE celebrations. And Noah LOVES them just like me. Oh and did I mention this year Noah wanted Dog themed parties? Oh yes we did! Tanner forces (begs) me not to go overboard for his (apparently teenagers don’t want bouncy castles and balloon animals).

 

Friend cake picture

Tracy at As You Like It Cakes makes all of Noah’s birthday cakes. That is our dog Brody in the middle and she even found a dog with headphones on! And it tasted beyond amazing.

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Adrian at AdrianMarieDesigns on Etsy is amazing. The invites I found were all for actual dog parties (you guys I had no idea how into dog parties people got, no judgement, I was just surprised). Adrian revised one of her invites to work for Noah’s party and then through our many conversations we found out we both had kiddos on the spectrum. She loved that Noah loved dogs so much, that she made this specialized print for him completely free and as a surprise. It now hangs in his room.

Community 

Working in the human services field and also in the non-profit sector I am constantly asking for things.  Funding is scarce for vulnerable populations and needs are vast. Daily I am humbled and overwhelmed by those who step up and help dreams come true. Here’s a list of  just some of what our awesome community members have done in the last few months:

-WinCo purchased a Caroline’s Cart for people with disabilities, so shopping would be an easier, more enjoyable experience

-Myndie at The Fourth Wall committed to putting on a free art class for adults and kids with disabilities 

-Pete Peterson (Dhw case manager/supervisor) and Katie Jennings (CDA Dhw, case manager) are offering a free training to my staff and others who work with kiddos with disabilities 

-Corey Sandstrom is allowing us to use The Orchid Room for the training 

-Cindy Moore is hosting a Farm Day for kids with disabilities to come and ride her horses and play with her chickens

-Village Center Cinemas will be offering a sensory friendly movie so people with sensory issues can come and enjoy a movie

-The Center for Arts and History donated passes to Art Under the Elms, so Imagine clients would be able to attend. 

-Terri “the ice cream lady” is going to do an ice cream fundraiser for The Green Apple Project 

-Skate Pierce is going to do a cocktail class to raise funds for The Green Apple Project 

-Multiple photographers volunteered their services for Faces of Autism 

-The Green Apple Project Board members jump in all the time to help in various ways- from the autism support group daycare to putting together an Amazon Smiles Donation account, to attending board meetings and lending their priceless expertise to our organization.  

-Imagine Behavioral staff  are always going WAY above and beyond to help the people they work with meet their needs and reach their dreams. My staff blow me away with their passion and drive every single day. 

Why am I writing this? Well lately I feel like we’ve been bombarded by heartbreaking, soul crushing events. There have been several days where I and many others have been consumed by these events and wanting and wishing we could do something. And of course each event prompts social media wars, as we try to make sense of it all. Find a reason, find a solution. As if we know. 

On one hand I’m glad that these events are being brought to the forefront and hard, honest conversations that need to happen are happening. We can no longer brush rape culture under the rug. We can’t act like mass shootings are normal. But on the other hand it can be all too easy to become fear filled and angry and distrusting of others. It can become all too easy to forget how much good there is in humankind. 
Once again I’m drawn to the Fred Rogers quote:


I am so lucky because I am reminded every day in the work that I do how many helpers there are in our community. I mean look at that list above. Not one of those people is gaining anything tangible or monetary. They are all doing, helping, giving simply because they care about others. The amount of lives that are being changed and touched by the helpers and the givers that I listed? Countless. 
So we can choose to be afraid, to be angry, to distrust and to an extent that is normal.  But don’t sit there for too long. Instead look at the helpers, the givers, they are everywhere. 

To the Lewis Clark Valley. I am proud and humbled to be a part of this community. 

Caroline’s Cart now at Lewiston WinCo!!!

Oh my gosh you guys! Remember when I did a blog post on Caroline’s Cart?! Check it out here for a refresher.
Well guess what?! A couple of phone calls to the awesome store manager, Jeremy Flores, at the Lewiston WinCo and Lewiston NOW HAS A CAROLINE’S CART AT WINCO!!!
Jeremy is amazing, I was expecting to have to figure out funding, put in some sort of application, wait weeks, etc, I mean I’m in the social work field and this is how things usually work, but nope we had a couple phone conversations about it and he just ordered one and now it’s here! There are so many good people in this community. I am so lucky to be reminded of that frequently.
“Caroline’s Cart is a shopping cart created for special needs children. It provides parents and caregivers a viable option to transport a child through a store while grocery shopping, without having the impossible task of having to maneuver a wheelchair and a traditional grocery cart at the same time. It is named after Caroline, the special needs daughter of Drew Ann and David Long.” You can check out their website here: http://www.carolinescart.com/
This will be a game changer for so many families when it comes to grocery shopping! Noah bug is fully ambulatory, however he gets overstimulated at grocery stores, so he almost always sits in the big part of the cart and we literally stack the groceries around him. He currently is able to fit in the cars they have attached to some of the carts at WInCo and loves it, but its a matter of time before he is too big for those as well.
I know so many families that will benefit from this right now! So many families that arrange childcare, so they can grocery shop or others that bring someone to push their child’s wheelchair while the other person pushes the grocery cart. It’s so easy to forget how simple tasks that many people take for granted, such as stopping to grab some milk require planning and extra support for families of children with disabilities. I am really wanting to get the word out about this cart, so that families know it exists and can start using it, so feel free to share this post!
Caroline's Cart
This is bug using the Caroline’s Cart at Target in Spokane.

Change

I’ve never been a big fan of change. I like predictable. I like plans and stability and spreadsheets and schedules and to do lists. So yeah, change doesn’t really fit into all of that. But the crutch of it is that change is the one constant in life.

Big decisions that affect my personal life take me FOREVER. I weigh every possible pro and con, talk it over incessantly with my husband and my parents while also begging them to treat me like a child and just tell me what to do, lose sleep and pretty much just overthink every possible scenario. But alas, after all of that I eventually make a decision.

So this is all leading to, I am starting a new job. After being at Goodwill Workforce and Family Services (WFS) for almost five years my last day was yesterday.  And it took me almost two months to decide to accept the other position. I have no idea why they still even want to speak to me let alone hire me after all of my questions and meetings and questions and questions before I finally felt 100% confident and accepted the offer. But I think that’s a huge part of why I did say yes. They wanted to make sure it was the best possible fit for me, as that’s the only way it would end up being a great fit for them. And that speaks very highly of an organization.

So I will be the manager at Imagine Developmental and Behavioral Services. This organization provides services to adults and kids with disabilities. What led me to this decision? I miss serving kids with disabilities. WFS is an amazing organization to work for. Amazing and I loved my job and the people I worked with. But they don’t work with kids and therefore I felt like something was missing. My passion is empowering people with disabilities to live a life as independently and meaningful as possible and my passion is also working with kids. And Imagine gives me the opportunity to do both.

I’m beyond excited about this new venture! Part of my extreme dislike of making big decisions means the levels I go through in order to finally make one, equals almost always feeling 100% about the decision I made, and in this case I know I made the right one.

I can’t wait to dive in and provide quality services for kids and adults with disabilities. I hold the bar high when it comes to providing quality services. Imagine is going to be an amazing organization for the valley and I’m grateful to be a part of it.

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Uncertainty

Once you’ve been through a serious medical experience with your child I don’t think you’re ever the same. I know Noah’s brain surgery changed me profoundly and I had to fight my way back to who I am now. But still I am not the same. And I still fight a deep anxiety. Medical appointments rarely seem routine to my heart and the minutes feel like hours, as I wait for test results. But there are soft moments like these in the waiting room, where my 90lb boy is overstimulated and done and crawls into my lap for comfort.

My Dad once told me he thinks my battle will be learning to live with uncertainty, as Noah’s diagnosis brings much of that. And he’s so right. Living with uncertainty is incredibly hard and painful for me at times. But the truth is that is all of us. I am not alone is this. Nothing is certain. Today. This moment. That’s all we have. And so grasp hold we must. Find the soft moments. They are everywhere.

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*Super serious sounding post, but Noah bug is good. Just some stuff we are sorting out and getting to the bottom of.

The Green Apple Project

Sometimes dreams do come true. Sometimes you don’t even realize it is a dream until a new friend turns into a best friend and smacks you in the head with it.  My friend Ruthie and I started a non-profit you guys. The Green Apple Project. We started it to help spread awareness and provide support and education about autism to our community. But I want to tell the whole story about how this came to be in my life. It’s long and it’s my heart, so you’ve been warned.

I have a degree in English.  And while I’m proud of that degree and I love to write and read it has never been a requirement for my job or a direct focus in my career.  Ok well reading and writing always apply, but you get my jest. Anyway my perfect plan was to graduate from BSU and head straight into an MFA program and one day be an English professor like my parents. Well the best laid plans of mice and men often go awry. I just made that up. Actually I didn’t. It’s from the poem To a Mouse by Robert Burns, but I really wish I made that up.

The summer after graduation I decided to heal my newly broken heart (oh young love😂) by moving across the U.S. to Virginia to work at a camp for adults and kids with disabilities. My experience with working with people with disabilities at that point? Zero, ziltch, nada. I just wanted to escape and apparently my (possibly tear soaked) cover letter and resume were convincing/desperate enough for them to take pity on me. Well without being overly dramatic that summer changed my life. To this day it is one of the best memories of my life as well.

It was called Camp Easter Seals. And boy, oh boy was I unprepared. It was hard and scary, sometimes terrifying, but that’s part of feeling deeply. Some of our kiddos and adults had very, very severe disabilities. There were multiple seizures, feeding tubes, catheters, intense behaviors, wheelchairs just stuff I had never faced before in my young 22 years. But there was SO MUCH JOY. More joy than I’d ever seen before. There was horseback riding, canoeing, hay rides, songs around the campfire, dancing, singing, joy everywhere. Joy in people who faced what many would consider unthinkable circumstances.

I learned so much that summer. I learned you don’t need words to communicate, you don’t need legs to dance, you don’t need to see to feel everything around you, you don’t need to hear to feel the beat of the music and move in rhythm. And after that summer I knew without a doubt that this was what I was meant to do with my life. And I never looked back.

When I got back to Idaho I started working with people with disabilities as a case manager. The job required a degree, but thankfully they weren’t picky on what field it was in, so I got it. Since then I have worked my way up at two other agencies and am currently the regional manager in Idaho for a non-profit. We provide services for adults and kids with disabilities. It’s hard to believe it’s been 14 years since that fateful summer and my career path has never wavered.

But there’s a pretty significant piece of this path that came along and further solidified that I was on the right track with my career. My Noah bug. My perfect, sweet, smart, amazing 10 year old boy was born in 2005. And as many of you know he was born missing a piece of his 18th chromosome and also has autism and sensory processing disorder. You guys I was going to be an English professor! My dream was to read and write and teach. And one summer changed all of that and lead me into a whole new career path and then 3 years later my bug was born. I know without a doubt that God put me on the path that lead me to Noah. The path that would help me be the Mama he needed. It all made sense the moment he was put in my arms. And since then it always has.

So when my friend Ruthie, whose son has autism, said hey I want you to start this non-profit with me I was in. It was really hard for Ruthie and me to decide to start with focusing solely on autism. We are dreamers. We want to help all kids with any diagnosis. We had countless conversations on this, Ruthie knowing how important it was to me given Noah’s other diagnoses and having the heart she does would listen to me go over and over my thoughts and I in turn would do the same.  But I’m so glad we decided to start how we did. While autism may be a word that everyone is familiar with there is truly a lack of resources and support for families in our community and we will be able to provide that to so many families who need it. Once we have gotten time and resources under our belt we plan on opening up our resources to all kids who need it. I am so proud of us for doing this. We have an amazing board and amazing fundraisers coming up and a support group for parents, guardians, grandparents, etc. with free childcare provided and we also have a resource library.

So yeah we started a non-profit and it’s called The Green Apple Project. And we are pretty stoked about what’s to come. Please check out and like our Facebook group: https://www.facebook.com/thegreenappleprojectlcv/

and our website: http://www.greenappleproject.org/

and spread the word!

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