Wednesday, April 10, 2019

I don't know how you don't. Spending time with Parker.

We are just a couple of days away from what *fingers crossed* will be Parker’s final high school prom. While he technically can attend 2 more, his friends will be too old to go with him and the next 2 years will be Allison’s junior and senior proms. We have worked really hard over the years for Allison to have moments that are just hers, just as Parker has moments that are just his. Our goal is that this is his final prom which was a hard decision because Parker really loves school dances. But we will cross those bridges when we come to them, for now – we are soaking in every amazing minute that is this year’s prom.

For me to really do that though, I need to get past something I’ve been holding onto. (I tend to do that… hold onto things and let them eat at me until I take the time to face them head on or write about them. *My preference is always writing). I didn’t want to hold onto this one, I also never wanted to hear it and I certainly did not want it to cut through me like a warm knife through butter, but it has and it’s time to let it go.

I’ve been told a lot of hurtful things over the years and I’ve overheard even worse. This is pretty common for all special needs parents (and if you wonder why we tend to isolate ourselves and be over the top momma bears… back up a sentence).  While I know this wasn’t intended to be brutal (is it ever?) it absolutely was. I also know it wasn’t meant for my ears but people are not as quiet as they think and, like Parker, I’m always paying attention.

Gah. I just need to spit it out. That’s how much this has bothered me. Not only have I held onto it internally but I’m stalling at even sharing it and my thoughts.

A couple of months ago we had a Rylee night. We had plans to see a show at the comedy club (Heywood Banks) then dinner. Parker looks forward to Rylee time more than anything – even more than Cubs games. Of all of his friends from growing up, Rylee is the one who always makes time. Always. That is what you do for your friends. You make time. Time doesn’t just happen or magically become available – we are all busy. You make time. It is a choice.  Rylee could make time to spend with Parker or she could make time to binge watch Netflix or go on a date with her boyfriend or take a nap or work overtime or go shopping or … I think you get the point. Each is her choice. Each requires her to make a decision on how she spends her time, she chooses to spend time with Parker just as she chooses everything else in her life. It is a choice she makes. She doesn't have more time than you. She simply makes a different choice than you so that she can be there for him.

I’m ahead of myself, I need to slow down and back up.

Our evening out with Rylee went not quite according to plan. Yes, we saw the show at the Jukebox and Heywood Banks was awesome as always. That said, that show ended up sold out, I ended up working through it and I had to move Allison and her friend to another table to make room for a reservation I had overlooked away from Parker and Rylee. So, while the plan was that I would sit with the kids and their friends and watch the show, that totally did not happen but Parker rolled 100% with the changes and loved every minute of the show.

After the show and pictures with Heywood, we went to Steak N Shake – Parker’s choice. When we arrived there was no one else there – thankfully. We were led to our table and Parker buckled. He wasn’t having it. There was no way he was sitting in this location. The waiter told us we could sit literally anywhere we wanted, together or apart, whatever worked for Parker. So, Parker picked a new table and we moved. And Parker buckled again, he didn’t want to sit there either. (Welcome to the world of anxiety.) He wanted back to the original spot so once again, we all moved back. Shortly after the place filled up and our food took forever (truly, over an hour) but once we sat and were situated, everything was fine. We had a good dinner.

On the way home I had to stop for gas. It was convenient because Parker also needed to go to the bathroom. No problem. I took him in with me planning for a quick in and out to use the bathroom and pay for gas and go. Only after Parker went to the bathroom – he wasn’t leaving the gas station. He wandered every aisle as they were minutes from closing. Absolutely not leaving. My phone was in the car so I couldn’t even call for help. After I knew there was no way for me to get him out of the gas station (even with every single thing I bribed him with) I was able to make my way past Parker (who would kick me anytime I tried to go by him) to the counter and asked the 2nd person there to please go to my car and ask Rylee to come inside. They happily did so. Rylee came in and I went to hide out of sight. Within a minute, Parker and Rylee were happily walking to the car, I followed, and the ride home was uneventful.

So, while it wasn’t our best evening, it wasn’t our worst and, hands down, Rylee was the reason we survived it.

So… what was it about that night that bothered me?

It was this…. At one point during the evening, someone said something to Rylee that I just can’t shake. They said to her, regarding her spending time with Parker, “I don’t know how you do it.”

Rylee was caught off guard and honestly, I don’t think before that she ever put much thought into “how she does it” because she simply just does it. Or, it could be she has been told that before a time or two or ten over the many years she has been friends with Parker and already knew the answer. She shrugged it off with something like, “I just do, he is my best friend.”

I don’t know that it bothered her or that she thought about it, we never discussed it but it cut me to my core. It was one of those reminders that my son is different. That for some he isn’t just a friend you go to hang out with because you enjoy his company. That for some, you go because you feel obligated or you go because he asked or I asked and you felt like you had to.

I cannot even begin to explain how much it hurts to even just type that. I've heard this a million times as a special needs mom but never in reference to being someone's friend. That stung.

My sweet guy is going to be 20 next month. His entire life I have advocated for him. His entire life I have taught people how to be his friend (let that soak in for a second). I have encouraged people to spend time with him and promised them they would be better for it. And they are. He has always been surrounded by people who love him and a good size group of friends who I am pretty certain simply enjoy being with him. But this was a reminder that not everything is how I choose to see it and, that hurts me in the moment and crushes me for the future.

From 2nd grade on (and even recently in a blog), I have repeatedly talked about the importance of friendship – to everyone. That everyone includes my son and every person living with a disability. It isn’t just in school; it is after school and throughout life, too. You don’t just stop wanting to have friends when you graduate high school. You don’t stop wishing your friends would come to hang out with you after you no longer see each other daily. Friendship is something everyone needs throughout their entire life. Not just you. Not just my son. Literally every single person.

I won’t say being friends with Parker is easy. He is very, very limited verbally. He will likely drop to the floor or go to the other room when you arrive until he is past the anxiety. He functions at a level significantly lower than his peers. He still loves Paw Patrol, he loves the “Don’t Step In It” poop game, he can’t talk politics or current events with you (although he can tell you almost any sports score)… he lives with significant challenges. That is his life. It isn’t going to change. It is his life. If it isn’t yours, count your damn blessings. Really, right frickin now. Count them.

Can you go to the store without being overcome with anxiety? Can you go to college? Can you get a job? Can you drive a car? Can you eat more than 5 or 6 foods? Can you call your friends and talk endlessly? Can you text more than the words “Yes” an “Ok”? Can you go see your friends whenever you choose? Can you say your friends would do the same? COUNT THEM. EVERY SINGLE ONE OF THEM. Not everyone has those blessings in life. They don’t. So stop taking them for granted. But more so – stop looking at people who DO take the time to include individuals with challenges into their lives and as their friends as though they have taken on some extreme challenge that would kill you. They haven’t. They have just made different choices that make a huge difference to the people they make time for.

People make choices every day. This isn’t limited to Parker’s peers. I see people daily – of every age - who make it a priority in their life to spend time with people with disabilities. Not because they have to but because they want to. They want to get to know these amazing people for who they are. They want to see them happy, hear them laugh, and encourage them to do more. They do this after work in the evenings, on weekends or during holidays. I’m sure people look at them as they do Rylee and think “I don’t know how you do it.”

Let me share a secret with you, I don’t know how you don’t.

I don’t know how you don’t make other people a priority in your life. I don’t know how you don’t make time to do something good for someone else. I don’t know how you don’t make the choice to include people who are different than you, especially when you have known them the majority of your life.

I get it. He’s my son. I'm prejudiced. I think he’s pretty awesome to hang out with, he makes me laugh, he makes me want to be better to learn more to do more to be more. But I get it. I’m his mom. I’m sure I am supposed to feel this way (although believe me when I say I’ve met parent’s who don’t). But I don’t understand the “I don’t know how you do it” mentality over spending time with another – incredibly good – human.

So, this weekend, when I flood your newsfeeds with prom pictures – do not, not even for one-second look at Rylee and think “I don’t know how you do it.” Instead, stop and look at yourself and ask yourself why you don’t.

Life is about choices. We all make them every day. You can choose to see the good in others and you can choose to spend time with them. Or you can choose not to. But when you chose not to and question how others do… they are not the ones missing out on life, experiences, or friendships… you are.

No matter your age, stop and think about who you know whose day would be completely made if you decided to take the time to visit with them. I can tell you that for Parker’s entire life, his day will ALWAYS be made when the people he knows, respects, and loves take the time to spend with him.

Stop wondering how someone else “does it” and just do it, then you’ll understand.

Friday, March 1, 2019

Unexpected Grief.

There are not a lot of weeks where Fragile X kicks my butt, however, this week was one of them. Not the entire week and not physically (whew! Nice change from those days!). I’m not even sure it’s 100% Fragile X as much as it is that cycle of grief that comes along when you least expect it.

Many years ago, Melissa and I argued with an editor over an article on grief. The original article stated that grief is something you experience once, and it’s done. Either you move on from it or you don’t. We could not have disagreed more, and the article was re-written to reflect our points of view. Grief is a vicious cycle, especially in the disability community. I wish I could say it is a one and done type of thing but it’s not. I wish I could tell you that there will be an end point to this cycle but no part of me believes that there is an endpoint. There are times you expect it – milestones, birthdays, driving, graduations, weddings, births… and times you don’t – when you see other children playing, something on tv, or an overheard conversation.

When you get a diagnosis that changes your life, there is no way to prepare yourself for the hits of grief that will come along the way because they always pop up when you least expect them. These last 2 days have been just that for me. I was going to write about each of them individually immediately after they happened, but I couldn’t. Emotionally I was not in a spot where I could write about it. I certainly did not expect back to back blows but grief, she’s a snarky little bitch like that and likes to kick you while you are down.

Last weekend I overheard something said to Rylee – that will be it’s own post when I’m ready to come to terms with it -  but it may have been what triggered this newest round of grief despite our week starting out pretty awesome.

Wednesday night, I had a meeting about Allison’s upcoming trip (in 2020) to London, Paris, Pompeii and more amazing places. My mom is going with her and those who know me best know that every single ounce of me wants to go, too. Three generations on a trip of a lifetime knocking off several places on my bucket list – um, yeah! However, it also comes at a time when Parker will still be living at home with me and leaving him for 12 days is simply not something that I’m sure we can make happen. The last time I left Parker (for a work event) for an extended period of time, it did not end well… at all… and I was stuck all the way across the country. I panic at the thought of something happening when I am an entire ocean away where I can’t just drop everything and fly home.  I’m also not ready to say it is impossible yet. I’m working on plans for a trial run this summer – it will be my final deciding factor. For now, I just needed to get to the meeting.

Parker is fickle. There are days he wants his independence and for me to leave him on his own while I run to the grocery store or to grab him something to eat. And for those 10 – 15 minutes, he is fine. He doesn’t even leave the couch. Other times, he’s more than happy to stay with Allison while I run longer errands. Even though they usually stay in separate rooms, they are at least both here. And then there are times where he does not want me out of his sight at all and I am left sneaking out of the house. That is a total crapshoot. Either it’s going to work or it isn’t.

Wednesday night, he was somewhere in the middle – which is the crappiest place because it leaves me not only guessing which way he will go but it shoots my anxiety right through the roof trying to guess. (Side note, that is never helpful to the situation, especially since Parker feeds off of my anxiety.) We finally agreed, I was going to the meeting and he was staying home with Allison. He was pretty ticked off about it but it was an important meeting and he didn’t like the option of going with me. Usually, when I leave him with Allison, he wants me to take Allison’s car – which is fine, it is always the last car in the driveway so it’s easier than moving it and then backing mine out. I grabbed her keys and walked out the door – while he yelled at me. (Always awesome *insert eye roll here if you missed the sarcasm*) I backed her car out and paused in front of the house debating if I should keep going or stop, park her car and go get mine. While my gut told me to park it, I went with the easy route and took her car (I'm not always the brightest.) After a couple of blocks, I called Allison to see how it was going and could hear him yelling, super mad in the other room. She told me it was “fine” even though it clearly was not. I asked her if she wanted me to bring her car back and take mine she said "no", the decision was made he would calm down and be fine so I kept going. I called her twice more on my 5-minute drive to the meeting across town. I should note, my anxiety never helps her either. By the time I reached the doors to go in, Parker was still yelling and I had Allison worked up enough that she was crying. Because… *mom of the year* here, I pushed them both way more than I should have. My fear was he wouldn’t calm down (he was mad I took her car) and while he never goes after his sister physically and while he hasn’t had a physical meltdown in forever (knock on something now and loudly), it was a growing fear that this was not going to end well when I said, “Do you need me to come home?” and through her tears she said, “Yes.”

I picked up the papers and let them know I could not stay (incredibly understanding people who have known Parker forever and love him) and headed home. I cried the entire drive home (all 5 minutes of it) feeling completely defeated and knowing if I can’t leave him with Allison for an hour, leaving him for 12 days is truly impossible. That is when the grief of living the life of everyone around me who can attend meetings, go on trips, or do anything spur of the moment hit me… like a ton of bricks, even though I knew I was partially to blame for this night.

When I walked in the door, he was angry I was home “What are you doing here?” he yelled at me. With a sigh, I walked into the kitchen to start his bedtime medications trying to shake off my disappointment in myself for letting my anxiety get us all upset while also noticing we both immediately came down 10 notches just by being in the same room again.

While I know my anxiety played a role in that night, the reality is though that if conditions are not perfect it doesn’t go well and I know it. So when conditions are not perfect, my anxiety rises. I do my best to keep that hidden but it’s always there.

I dealt with that grief in the best way possible (*insert sarcastic eye roll again*) by being angry at every person who has ever rolled their eyes at me, talked behind my back or to my face about me not attending meetings but also wanting to have a voice in what is going on. Seriously. They have no idea what it takes to make something “so simple” as a meeting or wedding/baby shower, or even just meeting up for dinner. It’s not just that it takes planning, I’m pretty sure I’m planning in the few hours I actually sleep at night, planning is just part of what we do in this house. I plan in “something spontaneous” often, that is how plan dependent we are. But the reality is, the planning means nothing if Parker isn’t willing to stay with someone who isn’t me. And there are very few people he wants to stay with (cue Rylee, Kylie, Remi, and friends here). I’ve been called back too many times by family and Parker sitters to know that the look he gives when I leave (or attempt to leave) will let me know if it’s even worth the walk to the car or not.

So now I’m grieving that I can’t go to a meeting, that I likely cannot take the trip with Allison, AND that I’m judged for not being able to attend (totally not the meeting that night but different ones), and that I have anxiety that adds a layer of crap to the already challenging life we live all while trying to not let ANY of that show. And I’m grieving that people lack the empathy to be understanding – but I grieve that almost every single time I log into social media.

I go to bed in a funk, trying to clear my mind to start Thursday new. And it worked. Thursday was pretty awesome. We had a great morning, Allison was excited about her Dr. Seuss project at school,  Parker was completely on board with the change in our schedule for his dad to pick him up from school so I could spend the day with my grandma while my mom was away on a trip with my dad. It was a good day for us all.

I was certain I had emotionally dealt with this cycle and was moving on, because, well, that is what I do. Keep moving forward with a smile, ready for whatever is next and next at that moment was basketball practice for Parker.

I enjoy watching Parker and his teammates practice. Parker doesn’t like to be watched so much so I stay busy with a game on my phone while listening and the watching when I know he isn’t looking. And of course, watching more closely when I see that grin on his face that he wants me to watch. This was a good end to my day. He was happy, everyone was having fun, everything in that moment felt good. This was happiness taking over every bit of me.

Until a conversation caught my attention from a couple of moms the next table over. 

Before I go further, I want to say this, I want to be very clear, these moms have every reason to be excited and happy and nervous and, really, over the moon thrilled with this opportunity. Every reason. Please do not think I am trying to take that from them and I really do not want you to take it from them either. I am truly happy for them and excited about the next steps in their lives. You can be all of that and still have the wind knocked from your sails. Really, I experience it often, you can be. So please know this WAS the right time and place for their conversation and I am excited and happy for them and really hope you are, too.

Parker is one of the very few who have stayed in school after his class graduates. It’s hard for me to grasp why some parents don’t keep their special needs kids in school longer for job and life skills especially when there is absolutely no plan for them after graduation. But, very few here do and many end up regretting it. That said, Parker is significantly more affected by his disability than most of the others. So, it was a much easier decision for us to make.

I’ve watched 3 other families that I know (across the US) send their special needs kids to a college program where they live on campus and get to experience college, typically for 2 years, at a major university. These programs are amazing, hard to get into, and awesomely something I see happening more and more across the country. I cannot say enough about fantastic these programs are and the really awesome things I’ve seen my friend’s kids accomplish as part of them.

The moms Thursday night were discussing sending their sons to one of these programs and the incredible experience one of Parker’s former teammates is having through one of these programs. It was all things as a special needs mom you want to happen for your child. It is acceptance, the college experience, awesome life skills, and so much more. So while my heart was leaping with excitement to see another family I know looking into this, my brain turned my focus to my amazing boy on the basketball court forcing me to see the reality that he is the lowest functioning on the team, reminding me that no one believes in him the way his Momma does and that this is something too far from his reach.

(*Stop now and get some kleenex. This is your warning.*)

It hit like a ton of bricks. I forced a smile the rest of practice while my heart shattered, again, and my mind flooded with everything I had dreamed of for my son that will never happen. Things I had suppressed pretty damn well for a long time. And the fear of his future crept back in taking over front and center of my every thought.

I have a plan for Parker. I wish it were so much more than it is. I don’t know if it will work. I don’t have a plan B… or C…. or D… or E… or F – which is how our life works. You always have multiple plans. I’m still working to finalize every single unthinkable detail for plan A.

The plan doesn’t include one of these college programs. The reality is, this is another thing he is excluded from because he isn’t high enough functioning. Just stop a minute and let that one soak into your brain the way it has mine. My son doesn’t qualify for a program for individuals with special needs because his needs are too great for the program. He can’t function at a high enough level to succeed in a special needs program.

There is no way around that reality without being brutally honest and saying that fucking hurts. (I'm not even going to apologize for the f-bomb that's how much it hurts.)

Here’s the thing and I know it will be the first comments said to me, this does not change how much I love my son, nor does it change how awesome he is, or how happy we are for those who get to have this experience.

Here is the reality that is with me every day though... 

My son is never going to get married. Much to his extreme dismay, I don’t even know that he will be high enough functioning to have a girlfriend.

My son is never going to be a father. Or grandfather.

My son is never going to go to college.

My son is never going to drive a car.

My son is never going to be the “star” / “top player” of anything.

My son will never hold a full-time job.

My son is never going to be completely independent.

My son will always need someone, every single day for the majority of the day, in his life so he is able to be a part of our society.

My son will always be at risk of someone taking advantage of him.

My son will always be at risk of being abused.

My son will always be at risk of being bullied.

My son is at a higher risk for police brutality due to his inability to communicate and his actions when he is overwhelmed. 

These are honest facts about our life. These are all things I grieve. Sometimes all at once. Sometimes for days, weeks, or even months and years.

These are also things I have accepted (or come to terms with and advocated against).

Despite the grief. Despite the reality. NONE of this changes who my son is to me, how much I love him – and who I work hard to be sure the world sees about him, too.

My son is the very best son I could ever ask for.

My son loves unconditionally.

My son sees the good in every single person and thing around him.

My son has the best sense of humor.

My son has the best laugh, even his fake one where he snorts to mock me (because I snort when I laugh at times.)

My son is an amazing little big brother to Allison.

My son is a pretty awesome step-brother to Abby & Grace.

My son would demolish anyone who hurt his sisters. 😊 (Be warned, the dude is a very protective big brother.)

My son is always learning.

My son is the biggest Cubs / Bears / Bulls fan around.

My son has empathy and compassion.

My son is nurturing (he really loves babies and old people!).

My son has manners, most of the time. He is 19, they come and go but they are there.

My son has friends who love him and are there for him.

My son has fantastic parents, siblings and extended family who’s world he lights up every day.

My son will always believe in you. He will always see the best in you.

My son will bring out the best in you.

My son will make your world better.

My son will teach you about humanity, humility, compassion, empathy, laughter, and love… and the Cubs, Bulls, and Bears.

My son will always be trying new things.

My son will always be pushing himself outside of his comfort zone.

My son will be successful. He will have failures and setbacks but he will always get back up and try again.

My son is simply the most amazing 19-year old I know.

My son (and my daughter) completed me and made me a better person.

I’m always going to have moments of grief. They are always going to hit me when I least expect. These moments do not change how much I love my son, how much I love that he still tells me he loves me multiple times before going to bed, or how much I love that I still get to tuck him in each night.

You are allowed to grieve. You are allowed to hate that your child has this disability. You are allowed to mourn the person they will never be WHILE celebrating the person they are and will be.

It’s ok.

It’s allowed. It doesn’t make you a bad parent. It makes you human.

Right now, I’m hit hard. I’ve cried the last 2 nights to the point that my face is raw from the tears that sting my face. It’s been a long time since anything has hit me this hard but that is how grief works in the disability world. I may be fine later today, or tomorrow, or it may take me much longer, but I know, I will be fine again. I don’t know if something else will pop up in the immediate future to carry this on a bit longer or hit me just one or two more times while I’m down, but I do know I’ll get through it. And I know that this happens far less than it used to. I could go months or even years without being hit this hard in this vicious cycle.

While I grieve, I don't love my son less – if anything I love him more. I don’t resent him for the things that I cannot do, instead, I appreciate him for the things I can and the way I see the world because of him. 

Inchstones, my friends, inchstones. If you are missing them, you are missing the world.

Friday, January 11, 2019

Adult Friends, He Still Needs You.

Dear adult friends of my son with a disability,

He still needs you.

Really, it is that simple. He still needs you and he always will.

You’ve been through a lot together. Some of you have known him since you were 5 and walked through those great big doors at Eastview to start kindergarten.

You were with him and friends before you realized he was “different”. From the start, you accepted and loved him. Before I ever walked into your classroom and asked you to, you loved and accepted him.

When you were in 2nd grade, for full of nerves and tears, I stood in front of you for the first time to explain Fragile X Syndrome. I would come back for many years to keep sharing more information with you, over the years you all became experts soaking in the knowledge and using it to be the best friend you could be with him.

Over time, you saw the most challenging moments in our lives. You watched my sweet little boy hide under desks, clear everything off shelves and desks when frustrated, and sheer fear as he changed schools from the grade school to the middle school to the high school. And you stood right by him, through it all and in turn, you saw the very best moments from him, too. You saw him stand proudly with you through music concerts, climb the wall at Outward Ingersoll, and walk the stage after being crowned prom king.

And in a day that came entirely too fast, you watched him walk with you onto the football field and across the stage, with Rylee in tow, for your high school graduation.

We reached those moments together, often with me in tears of either pride or fear, as a class and as a community. We were a part of his every success.

I asked you for a promise, shortly before graduation, that I knew was huge. I knew it was bigger than you could fully grasp at that time but I knew it needed to be asked. I knew it would come with the best of intentions and the biggest of challenges. I asked to you promise me that you would stay in his life.

I asked that as you started your adult lives, in college and in the workforce, that you continued to involve him. That as you got married and started families, that you continue to involve him. 

I know friendships come and go. But friendships for us are much easier than friendships for Parker. You will meet new people through school and work and life experiences in general. Parker will too, but not with the ability that we have to create and foster friendships through opportunities.

But, it is also bigger than that. Way bigger. It goes beyond him not being able to understand why you stop coming to see him. It goes beyond the sadness and being alone. It is so much bigger…

I want you to think back to when I would come into the school and talk to you. While I added new information every year, I also repeated something every single time. “He learns from watching you.” “You are his greatest teacher.”

Parker will always be learning, just like you, for his entire life. He needs you, to help him navigate adulthood. He needs you to understand this new world and how to function in it. The more you do with him, the more he is able to model your behaviors. This is also why I have always said, you have to be on your best behavior with him. He is watching you, modeling you, repeating you. You are and will always be, his greatest teachers.

While we love to have you visit at the house and you are always, always, welcome here, the biggest moments for Parker is when you take him out. When you pick him up and go out to eat or take him to a movie or basketball/football game – he is watching you, he is learning. He watches how you order food, how you interact with people around you, how you respond to every situation. He is learning…still, from you. You will always be his greatest teacher.

And he LOVES this time! He loves to feel independent, to take off and go with his friends, to do things just like you – with you.

Now that some time has passed since your graduation and your lives are becoming more busy, more complex – I ask you, again, to promise me you will always take time to step away from the chaos, to slow down and enjoy some time with my son. To pick him up and take him out for chicken nuggets, to a movie or game. Take time to slow down and enjoy the simple moments that make us laugh, appreciate the things we take for granted, to remember how much you continue to learn from him, too.

He is always going to need you. I am not always going to be here to ask or remind you. I need to know that without me asking you will still be here. When you have families, you will introduce him to your children, you will involve them in your outings with him. We know they will be better for knowing him, too. He loves babies. Loves them! That said, do not rush into starting families 😉 He isn’t going anywhere, take your time!

Parker is so lucky. He has friends who continue to make time for him. He loves these moments and talks about them endlessly. As his mom, I appreciate you and the time you make for him. Please don’t stop. He’s always going to need you.

And, if you haven’t seen him in a while and would like to hang out with him, let me know – he loves to fill up the dates on his calendar with plans.

It may seem like as life has kept moving forward that he doesn’t need you, but that’s simply not true. He continues to need you now as much as he ever has… and I have a feeling you need him, too.

With love,
Parker’s mom

Wednesday, December 5, 2018

Routines change, sometimes with a smile!

Mornings typically go pretty smooth – and quick – in our home. Parker and I tend to glide through our morning routine together while Allison has her own routine that is a complete mystery to me but starts with me waking her up and ends with her gracefully walking up the stairs in record times, fully ready head to toe for a quick goodbye before taking off for school.

I’m pretty sure the latter, with Allison, is much more the “typical” morning routines of parents with teenagers but, as the mom of a 19 year old who requires assistance throughout his day – “typical” is something new that Allison is teaching me along the way.

For Parker and I, though, mornings are exactly the same every day: Parker wakes up, gets dressed, and turns on all of his inflatables, checks the sports scores on his iPad and his phone – just in case Rylee has text him then settles in to watch Power Rangers on his iPad with his headphones on so he doesn’t wake me (this took 18 years and I am ridiculously happy about it each morning – still!) and either waits until I wake up – or he has to go to the bathroom before yelling for me, whichever comes first. After I am awake, things move pretty fast and always in the same order:

1.       Let Daisy outside to potty.

2.       Feed the cats. Parker feeds them dry food and hands me the spoon and packet of wet food to be divided between the 3 cats as we tell the kitties “Good Morning”.

3.        Let Daisy in and feed her.

4.       Check the calendar and review the day.

5.       Give Parker his meds.

6.       Take my meds.

7.       Fix Allison’s lunch (Parker and I split this job)

8.       Deodorant and brushing teeth

9.       Start Allison’s car and clean off any snow (say nothing about her being spoiled, this girl is my saving grace. If I can warm up her car and make her lunch – I will and not feel at all guilty about it. She has never asked me to and would happily do it on her own. This is what I choose to do.)

10.   Birthdays (Facebook)

11.   Pants (he gets dressed in shorts, pants are my requirement due to the fact that it is under 30 outside), socks, shoes.

12.   Track Allison as she drives to school (some may call this stalking but we find it to be endless fun watching her icon move on the app that tracks her!)

13.   Take Parker to school

All of this happens in about 20 minutes.

Now and then we hit bumps in our morning routine, Parker and I… we oversleep, we are out of cat food… but we tend to make up the time pretty quickly and move on with our day. So when this past Monday came with a meltdown, it threw us both for a loop.

There are a million reasons that could have been the reason for Monday’s before school meltdown.

·       There were several tornadoes locally on Sunday which included our phones going off frequently with warnings, the sirens going off and our radio in the car being interrupted with updates (we were in the car during most of it and not close to the impacted areas). It was stressful.

·       He decided he wanted to do laundry that morning and wash his Power Rangers shirt. He is in a rut of only wanting to wear either his Power Rangers shirt or his TMNT shirt and switching back and forth daily (or several times a day) at the moment. Despite having multiple of each, there is only one of each he will wear.

·       His schedule for Tuesday had been changed. School was letting out early and his dad could not pick him up after school as he had to participate in the active shooter training at the school so I would be changing my Tuesday plans to pick up Parker at 11:30.

·       We are still adjusting to the time change.

·       It is holiday anxiety time. During the calendar check each morning, he goes over where he will be Christmas Eve, Christmas Day, and other days we are celebrating and for how long each day, along with who will be at each gathering.

·       He was low on Goldfish.

Who knows. The reality is we never will. We will never know if it was something that happened the day before or that might happen the day after that triggered the meltdown. We will never know if it was regret over washing the shirt and wanting to wear it now instead of the next day or if it was upcoming holidays or maybe a not so good night’s sleep. This is part of our life. When meltdowns happen, 90% of the time, it is a complete guessing game as to why.

When meltdowns were violent and frequent, every aspect of Parker’s day was documented. It was the only way we could truly attempt to figure it out – at home and school. Those days are part of our past now. Thankfully.

We are in a much better place. So this random meltdown, really threw me for a loop. I had plans that day to spend the day with my Grandma. Keeping to our schedule was crucial so I did not only keep Parker on track but also so I would not throw off my Grandma’s day. Parker knew I was spending the day with her as it was on the calendar.

Our morning had went beautifully, until Allison left. It was that moment when Parker announced he wasn’t going to school today. “I’m sorry.” followed by “I’m not doing it. I will go tomorrow.” He kept repeating “I’m scared.” and “I’m sorry.” My heart was breaking as I was trying to figure out why. Why would he say he was scared. I asked every question I wanted an answer to knowing he could not give me the answers. “Is someone hurting you at school?” “Is someone being mean to you?” “Did someone say something?” I hate that I do not know the answers to these questions, with every fiber of my being. It takes so much trust as a special needs parent to ever let your child out of your sight, but the reality is we have to. I can’t keep Parker by my side 24/7 – that is not good for either of us. And I won’t be here 24/7 to be by his side. I have to not only let him grow up but be sure he grows up and finds some independence so when the time comes that I am not here, he will be ok. I had to learn to trust others with him. To trust them that they will protect him while also teaching him independence. I have been picky with who works with him when that trust is taken from me. I won’t accept anyone who lies to me working with him, which is well documented.

As the minutes went by and I tried to re-direct him, it was clear he was holding his ground. It was now 8 am, the time I normally drop him off at school.  Every minute from this point on was going to be cutting into the time I had before leaving for Grandma’s and there wasn’t much to work with.

At 8:05 I text his dad. Parker was done and getting incredibly agitated with me. My mind always goes back to the violent physical meltdowns that used to happen – sometimes multiple times a day – when he reaches this point. Even though it has been an incredibly long time since he has physically come at me, everything inside of me changes and prepares (braces) for it. I know it could happen and I know that as much as I don’t want him to feel my anxiety, this is the hardest time for me to keep my anxiety down. I am running late. He is running late. I don’t know if he is going to stay calm or lunge at me. In the past couple of years, when he lunges at me, he lunges with his fist tightened and arm raised, stopping just inches from me – holding back from physical contact. As soon as that happened, I knew I needed to step away. My anxiety was not helping either of us. When you read articles about PTSD and special needs parents, it is no joke. It took me years to admit it but I see it clearly now in myself and in others.

By 8:10, with Parker’s upset repetitive speech turning to “I don’t want to be tardy.” “I don’t want to be late” with the reminder of “I’m not going today” running high, I agreed to have his dad come. Trying to reason with Parker at this point only would make it worse. I know because I tried. I tried knowing it would not help but because in that one part of my mind, I can’t help but try still. I tried to change the topic while we waited for his dad. I didn’t have a choice, I needed to be leaving soon and sometimes that change in person makes all of the difference. His dad and I both know this. Sometimes the best thing we can do is call the other – or someone else – in while we step away. I let his teacher know what our situation was and discussed with her how she could help.

When Scott arrived, I walked away. The last thing we want is for Parker to feel ganged up on, I would not have been helpful, especially with my anxiety running high. It was time for me to step away and let his dad do his thing. He did and moments later, with an agreement to go back to his dad’s house, they left.

A short time later, after being at his dad’s house, he went to school. The rest of his day went beautifully. I love happy endings!

But, it wasn’t completely over. I wish our lives were that simple! The reality was, Parker had started a new routine. That quickly, without planning, he started a new morning routine and I knew it. It wouldn’t be the morning routine for his dad that he does once a week, it would be for my house because that is where this happened. Since this was his night at his dad’s, I had a full day to figure out what our new morning routine would be. My options were, do something new to create a new routine that I had control over or wait this out and see how far he was going to push his new morning routine. It sucks that it takes just ONE off day to change everything but I have lived this life long enough to know that is all it takes and that I was not having it.

My new plan was pretty simple and one I had already been discussing with Allison since she got her drivers license and car. Allison would take her brother to school with her. We had planned on doing this after the first of the year so we knew she was comfortable driving to and from school before adding in her brother. We were simply going to move that date up. The trick was, what would I tell Parker? Why would I not be able to drive him? This is where fate jumped in. In a rare occurrence, I had let the gas in my car get low enough that the “needs gas” light had come on the night before as I was taking Parker to basketball practice.

That was it. I could not take Parker to school because I did not have enough gas in my car! (Despite the fact that I filled the car up with gas after I dropped him off at practice 😉 ) While part of me was a bit surprised that he was good with this reason, part of me also knows how much he misses his friends driving him to school each day and that sense of “normalcy” that came with it. Getting to go with his sister was big! I mean, really, if you had the choice of your mom or sister taking you to school, you would likely choose your sister too, no matter how awesome your mom is.

So, that brings us to today. We did our routine, every step as we always have until it was time for Allison to leave. At that time, Parker jumped up, grabbed his backpack and together they left.  I even snuck in a picture of my smiling boy before they left.
Look at that smile!! 

And, to keep with our routine, after they left, I tracked them – on my own – to be sure they arrived safely. 
In the parking lot!

In the school!

Ahhhh… our lives may be the furthest thing from “typical” but I would like to believe they have taught us so much more along the way.

New routine set, with a smile. Potential new routine from hell, gone before it even had a chance to start. This is, in our lives, success.

Happy Wednesday my friends!

Wednesday, November 21, 2018

I won't apologize for this.

I’m that person who always apologizes. Like, literally, for everything.

Example: We are in the grocery store and you, a complete stranger, asks me to help you find something (this happens way more than you would think) and I can’t find it, despite looking everywhere and asking an employee to discover that they don’t even carry it… I will apologize to you. “I’m so sorry.” “I’m so sorry I couldn’t find it.” “I’m so sorry they do not have it.”

Example: I’m out for dinner with friends when there is a disagreement between them that I am not a part of but I can feel the tension. I will apologize even though I am not part of the conversation and redirect the conversation. “I’m so sorry, how about we….” “I’m sorry, it’s all good – really – have you …”

Example: We both reach to open the door at the gas station at the same time. Me “I’m sorry (holding door open) you can go in.”

Example: The neighbor complains about the weather. Me, “I’m so sorry.”

Really, it’s a bit ridiculous. When I meet people I should say, “Hi, I’m Holly, I am sorry, I will apologize frequently.”  It is just part of who I am. I have a huge heart and how others feel impacts me, I want this world to be a better place and if validating your situation with an apology helps, I’m fine with that.

I really mean it when I say it. I am sorry when I cannot help someone. I am sorry when people around me do not get along, I am sorry if I possibly stepped in front of someone, I am sorry that my neighbor doesn’t like the weather. I just want people to be happy. I am, to my core, a people pleaser. It’s not always a bad thing but lately, I’ve been noticing just how much I apologize. Then, during a recent conversation when I actually heard my words and it rocked my soul as I discovered there is one thing I will not apologize anymore for.

The other day I was discussing with a friend the topic of volunteering. I am the mom that will send in treats, money for items, whatever you need – I will do my best to be sure you get but the odds of you getting me in person is slim to none. I understand in order for some things to be successful you need people present – I’ve spent the last 15 years of my life fundraising and working with volunteers – I more than almost anyone understands it. But I also understand why some people simply cannot be there in person. Whether it is working long hours, multiple jobs or having small children at home, I understand these reasons. My reason happens to be 19.

It was during this conversation that I said, “I am sorry I cannot be there, I cannot leave Parker.” and just like that, it hit me. Deep in my soul, my words echoed “I’m sorry because of Parker.” Instantly I thought of the many, MANY, times I have apologized for leaving a family function early, or not attended at all and apologized that it was just too much on Parker, we had reached his limit. I thought of the many times I had not volunteered in person because I couldn’t leave Parker and, again, apologized for that. I thought of all of the times I apologized because of Parker and it sucked the wind right from me.

At that moment, everything around me stopped. It hit me just that hard, it was like time stood still long enough for me to absorb my words and the impact of what I had been saying. And in that moment, I swore to myself I would stop.

Here’s the thing, Parker was born with a genetic disability. He lives with having Fragile X Syndrome 24/7. He didn’t get a choice in this (in all fairness, neither did I). This is his life. He does his absolute best (most of the time – I mean, he is 19 with his momma wrapped around his finger) to get through each day. And that is not so easy when you live with sensory processing challenges, hyperarousal, a crap ton of anxiety, and cognitive impairment. Getting through the day takes everything from both of us, it can be exhausting. It can also be awesome, amazing, inspiring and – quite honestly, fun.
Our reality is he needs someone with him 24/7. He needs help with basic life skills. He needs help with all of the things we take for granted. We are pretty much joined at the hip. You want me, you get Parker, and, in many situations, that is not do-able. This is our life and I am so done apologizing for it.

I realized that when I apologize for not being able to do something or leaving early because of Parker, I am saying that I am sorry for him. And I am not. Or saying I am sorry for being a good mom who is doing what is best for her son. And I am not.

Yes, I am sorry he has challenges and wish I could fix every single one of them – but I am not sorry for him or doing what is best for him.

This is who he is and I love, celebrate and appreciate every single thing that makes him Parker. I won’t apologize that I cannot do something or need to leave early because Parker needs me or needs to take a break from what we are doing. I won’t.

There are many important things in this world but nothing more so to me than my children. And who they are makes me incredibly proud every single day, why would I apologize for that?

If you know me, you know that I am a single mom. You know that my son requires a lot of my time. You know that he cannot do everything. You know I carry a lot of guilt for all of that. But to think that I should say “I’m sorry” because I need to be there and do what is best for him… that’s not happening.

I will bake your cupcakes, send in money for snacks, and do what I can while he sleeps so I do not through his routine too out of whack but that is where it ends.  When he lets me know that he has had enough of a family gathering or outing we are on – we will go. We will say our goodbyes, our thank yous and we will leave. But I will not apologize for it.

I am not throwing his world into a tailspin anymore than necessary. And I’m not sorry for that. I am not. This is our life and I’m not apologizing for that. If it cannot be enough for you – that is not on me. That is on your ability to understand (or not) our lives.

I, along with many other who work with Parker on a daily basis, push him daily to do more and exceed expectations. Just because you do not see me push him in a situation that you are a part of does not mean I do not push him. It means I know my son like the back of my hand, I know when to push and I know when I can’t. I know when 2 hours at a family gathering is a victory, not something to push into 3 hours that lead to defeat. I believe on ending on a good note so that doing it again is easier the next time when maybe we can stay 3 hours. I remember when we could barely stay a half hour – we have come a long way.

Yes, there are many things we miss out on but what you may not realize are the amazing things that are part of our lives that you are missing out on. I have a 19-year-old who has a 15-minute bedtime routine just so we get all of our giggles and kisses in before he falls asleep. I have a 19-year-old that has zero issues with holding his mom’s hand in public when he’s overwhelmed. I have a 19-year-old that curls up on my lap when he is super tired or not feeling well. I have a 19-year-old who still thinks his momma hangs the moon. I have a 19-year-old that makes me laugh every day. I have a 19-year-old who truly understands unconditional love and acceptance. I have a 19-year-old who worries about his sister and loves her more than anything. I have a 19-year-old who brings so much light and laughter to my life every single day. I have more than just a 19-year-old. I have a son. I have Parker.
Our life is not yours. Our life is ours. You don’t have to understand it. You are welcome to be thankful it is not yours. But what you don’t get to do is judge me because I put him first.

In our life, we celebrate inchstones just as you do milestones. (shout out to M & P!)

In our life, we do not apologize for who we are.

And now, in our life, we do not apologize for what we cannot do. This is our reality and we embrace that, not apologize for it.

You are always welcome to expect more from me and please, keep asking me to volunteer or to spend time with you - I always will do what I can - sometimes in person, sometimes not but when I cannot do something, especially because I have Parker, I'm not going to feel guilty about it and I definitely won't be apologizing for it anymore.

*Just to clarify – my friend is amazing, she fully understands our lives. She was not being critical of me. It was just a conversation on the topic of volunteering that led to a deep reflection and I very much appreciate that.*

Friday, November 2, 2018

An IEP through the tears of mom

It’s that time of year again, the leaves are starting to fall and the IEP’s are in full swing.

I’ve been going to IEP meetings since Parker was 3, they are part of our lives. For 16 years we have been sitting in meetings with anywhere from 4 – 24 people discussing the strengths and weaknesses of my son. While the meetings are easier to attend and I am no longer fighting for services or accommodations, there is one thing that still happens every time I walk in to the meeting, I cry. Every single time.

Me. The person who has not only attended 16 years of IEP’s for my own child but has also served as an advocate attending over 30 IEP meetings in 5 states in person and by video.

Me. The voice of reason, persistence, knowledge, and expertise for each meeting I have attended as a parent and as an advocate.

Me. The person with a plan going in on what is needed, how we will accomplish it and what I want to walk out with in writing in my hand.

Me. The person who can recite pages from the Wright’s Law books, show cases of examples, and is equally as qualified to write the IEP as anyone at that table.

Me… the person who gave birth to the amazing young man we are discussing.

I cry.

Never at anyone else’s IEP meetings, I oddly look forward to those – I like the reminder now and then that I know what I am talking about, the laws, and how to help schools provide the most appropriate educational experience for the student. I love building partnerships between parents and schools and helping both sides see the bigger picture through a different view. I love to see teamwork and success where there was not before. In those meetings I am professional Holly. Strong, Educated, Ready.

Parker’s IEP’s are different. I am mom. I am still professional, well mostly. I am still strong, educated and ready – never do I walk in unprepared. But, I am his mom. He is my first born and holds a connection to me deeper than any emotion I could imagine. I am his voice. I am not only the person with the machete cutting down a new path but also the person mixing and pouring the concrete so others can walk on it once it has dried in too in many cases – because I am his mom and this is what he deserves.

You would think though, after 16 years of these meetings, that by now, I would be fine – but I am not.
Even more confusing to the people around the table is that I know what I am walking into and even better… I am walking into a team who is on the same page as me. There is no disagreement on the next steps or most appropriate services. Just a solid team of people who work with him now and those ready to step in and be there for his future.  *I have always walked into a team who was wanting the best for him, we just didn’t always see eye to eye at the start of the meetings on the middle ground but, in the end, we always came together.

Here is the thing. Every minute of our lives, we live in a bit of a bubble. The Parker bubble. This is just what our lives are – while our lives are different than most, it is not different for us. It is just life. It is a world where people see the best in Parker and encourage him through his moments of challenge. It is a world filled with laughter, routine, and… well, a lot of gold fish crackers. Most of all, it is just filled with unconditional, deep to your soul, love.

In that world, while it is filled with the realities of his disability, it’s not looked at in the way it is in an IEP meeting. That is a reality that sucks the wind right from your sails. I know how far he has come and what he has accomplished, what I don’t think about except for during these meetings are the actual levels of function. Partially because they hold as much weight in our life as a grain of salt and partially because not thinking about it prevents me from holding him back and not pushing him more.

So, today, I walked into the IEP meeting after already dropping off 5 dozen cupcakes for those attending meetings today (because, seriously, you need something special on these days – both parents and teachers) ready. I was in a great mood, I was well rested, I was prepared for the plan for the next year. I walked in, we did introductions, a bit of small talk and then turned it over to the teacher to begin.

The meetings always begin the same, listing out Parker’s strengths. If your IEP meeting does not start like this, you need to fix that. We started this very early on, along with a picture of Parker on the table as a reminder of who we were talking about and why we were there. This is always a great way to start the meeting and I’m good through this – who doesn’t love to hear the great things about their child?!? Then we moved on to Parker’s present level of academic achievement and before she could even start, the tears began to fall and there was nothing I could do to stop them. This is the reality I only look at during these meetings.

On the MobyMax Math assessment, Parker earned a 1.3 grade level. He can identify his coins and with a manipulative add 2 numbers together….given X he can do Y with __% accuracy…” the words trail on as my heart cheers the 1.3 grade level – we worked hard for that.

On a recent RAPS360 reading assessment Parker placed a the 2nd grade level in phonic skills and listening vocabulary. He did not pass the visual scanning proficiency….” More tears as my mind retains 2nd grade and “did not pass”.

“….using MobyMax (aligned with Common Core Standards) Parker placed at a .2 grade level in reading assessment and language arts….” More tears as my mind is trying to figure out what exactly a .2 grade level is.

“Parker can read 181 sight words from levels 1 & 2 of the Edmark Reading Program and can read and demonstrate a good comprehension of 75 survival signs and 84 fast food words for a total 159 functional words…” More tears as I grin knowing there is only 1 thing on any fast food menu Parker will eat. I always find this amusing but also useful and am glad he can do it and they were sure he learned it, maybe one day he will broaden his horizons and try some of it.

His PE teacher talked about how happy Parker is for PE each day and that he has loved the section on basketball and that bowling starts next week. PE is Parker’s favorite subject 😊

We continue onto Parker’s present levels of functional performance where I learn he can clean a bathroom or kitchen sink with 33% accuracy – something I would be happy to see him do at home. We talked a lot about his current job through the school in the community. Parker works at Advanced Rehab & Sports Medicine 5 days a week, the last 2 class periods of the day. He has a job coach with him, Amanda, who he really enjoys – and is testing as she mentioned in her review with the teachers that he will sometimes ask her to do things for him. *Laughing* Thankfully she is a wise lady and does not fall prey to his handsomeness and blue eyes and makes him do it himself – because he can and should! She is a good fit with Parker.

His teacher read his work evaluation which was great. We talked about how there are so many more jobs Parker can learn at this one place, surrounded by people who support him. We talked about how places like this can be life long as he can learn his routine and be prompted by the small staff to learn new jobs and stay on task because Parker can’t have a job coach his entire life but he can have amazing co-workers. Right now, he has both which is a pretty awesome glimpse into what can be.

Here is where the tears mostly stop.

Parker LOVES his job. He loves that it is sports related. He loves the people he works with. He loves the work that he does. Because of this job, HE has changed his mind about his future. He no longer wants to work at HyVee (our grocery store) – the job we picked for him because we thought he would like it, he wants to work here. Forever. And I pray that we can make that happen for him. Parker loves working with Jason and the team in Canton.

This is huge in our world. Parker decided. We didn’t. His disability didn’t. He decided. This is a job that pulls in things he can do successfully, teaches him new skills, keeps him interacting with people of all ages and where talking sports is a good thing.

We wrapped up the meeting by reviewing the new goals for Parker, discussing the roles different agencies can play in Parker’s future and about his long term housing goals. It was, as most are, a very good meeting.

As we were about to say goodbye, I could feel the tears coming back. A bit of relief. A bit of anxiety. A bit of fear of the future. I let them know pretty much what I shared with you, it’s hard to leave my Parker bubble for this meeting and to hear that my 19 year old functions so low according to tests. And, while we celebrate the levels that he is functioning at – because we all worked our tails off to get to here – it is a reality check we don’t often look at. A reminder that through all the work I have done over the years, all of the battles we have faced, at the end of the day I am not just human, I am also his mom.

We don’t see Parker for someone who only has a good comprehension of 159 words. Or that has mastered 181 words through Edmark. Or that does math at a first grade level. Or the .2 grade… whatever that is. We see him for Parker. For the young man who is kind, funny, hardworking, thoughtful, who wants other around him to be happy, who keeps tabs on his friends and loves his sports. We see his willingness to learn, his need for routine and his determination. We see those amazing blue eyes, that beautiful smile and feel those squeezy hugs. We protect his innocence and roll our eyes at his very typical 19 year old vocabulary. We see Parker. We see his abilities. We see his strengths. We acknowledge his weaknesses and accept and challenge them. We see Parker.

Here is the best part of it – this is what everyone on his team sees, too.

That’s a pretty good reason to tear up a bit as well. To know he is so well loved by everyone in his life – at home, at school, at work and in our community. Sometimes those tears are tears of thankfulness that we have reached this point and tears of hope that he never loses that.

To be loved and to belong, that’s a goal we never wrote out for him but certainly one that has been mastered.

My awesome friend, Paula Fasciano, shared this image the other day and I simply love it.
I am happy to say that not only does our entire team expect progress, we see it. 

**Side note – I just want to give a huge shout out to all of the businesses in our community who take part in the work program for students with disabilities and who hire adults with disabilities in our community. You are awesome and I truly appreciate and thank you for making these opportunities possible for our loved ones.**

**Side note part 2 – also a huge shout out to Parker’s team who is continually looking for the job that is the perfect fit for him and for his peers. It often takes thinking outside of the box to find that perfect fit and I love that you are always thinking as you are out in our community. You are also appreciated and making a huge difference. Thank you!**

***Side note part 3 – to every parent who has sat through an IEP (lol, like there is ever just one) you are amazing. Keep showing up. Keep participating. Keep building that relationship with your team – even when it’s hard and you don’t agree. Find that common ground. You are your child’s best advocate, do not forget that. You are amazing. I am proud of you. And, if you cry, it’s totally fine that your human side shows through your superhero cape once and awhile, too.**