Friday, May 31, 2019

Answers for Allison, another rare disease for our 1 in a million girl.

We are home!!

Thank you all so much for your prayers, positive thoughts, and well wishes. We had the best trip to the Mayo Clinic and are home with answers and direction.

The doctors knew very quickly what was going on with Allison during her initial exam, we were able to get a diagnosis in the first visit before any additional tests were done.

Allison has a very rare autoimmune disease called Juvenile Dermatomyositis with Myopathy and Arthritis. 

She got an IronMan sticker after her diagnosis because she's pretty rock star like that!
She is our 1 in a million, literally. 

Keep in mind that we are learning with this as we go 😊 I’m listing here technical info followed by how this impacts Allison info and of course, where you can learn more and if you’d like to donate to help cure JDM, I have that for you, too. Along with some super crazy similarities between this and our FX world.

Before I start, I want to say we were blown away with how amazing the Mayo Clinic was. Every single person there is friendly, helpful, and they truly are the best of the best. Lifelong family friends, Dea and Neil Curry, were there as we were and took us on a couple hour tour of Mayo, the shops, tunnels, and skywalks. This was huge for us and helped us not only learn the ropes but calm our nerves before our appointment. I truly appreciate their time, kindness, encouragement, and friendship.

Someone is always playing, patients, doctors, staff... it's beautiful!

 Allison met with both a fellow (Dr. Catalina Sanchez Alvarez) and her new specialist, Pediatric Rheumatologist Dr. Amir Orandi – both were friendly, positive, encouraging, and flat out amazing. They never rushed us. They LISTENED to me. Truly listened as I told them everything. They answered every question and offered to meet with us again before we left so we left with the best understanding possible (while feeling a bit overwhelmed) and had already reached out to Allison’s local doctors with details of her diagnosis, treatment, and letting them know they are there to answer any questions and always available to us and them. The patient educator who taught Allison (and me – everyone else in the room already knew how to do this) how to give her injections was amazing, too. I cannot say enough about the Mayo Clinic staff to truly cover how special and incredible they are – but I will keep trying to because I want to shout it from the rooftops.

Allison and Dr. Orandi

Also - they have the coolest floors in Pediatric Rheumatology!! (see pics below!)

I did not know going to Mayo Clinic was an option. To say I was frustrated with local doctors and specialists is an understatement and they have seen the Momma Bear side of me as I pushed for more and more tests when they had given up. I give them a lot of credit for dealing with me and the doctors at Mayo stressed that they were not surprised that the diagnosis was missed because it is so rare to come across. Especially her general doctors – this is not something they would see but just like Fragile X we plan to help them learn and hopefully help others walking in our shoes.

We only ended up at Mayo Clinic because Jen suggested it. I, honestly, did not know it was an option – or that they did more than cancer treatment. If you take away anything from this, please take Jen’s knowledge 😊 If you cannot get an answer locally CALL MAYO and go. Everyone can. For us, we were extremely lucky as pediatric rheumatology is hard to get into – Allison was only accepted because she was seen by an ADULT rheumatologist who was not specialized in children and did not give her a diagnosis (other than saying she was malnourished – do NOT get me started on that, lol). In hindsight, I’m thankful he did not diagnose her with arthritis, or we would have stopped looking for answers and the long-term damage that would have been done to Allison’s internal organs would likely have not been reversible. Pediatric rheumatology is one of the few departments that is harder to get into – most are able to easily get you in. PLEASE know YOU can go to Mayo WITHOUT a referral. If you are struggling to find an answer, call them. And if you see Jen and want to hug her or thank her for speaking up and making this suggestion to Scott and I – please do. I will forever be thankful that she did. While I have already thanked her a hundred times, it doesn’t feel like enough.

And my mom – seriously. She is the person who always listens to me and was the first to say there 100% was a connection between the rash on Allison’s eyelids and what was going on with her joints. I was persistent in pointing it out to the doctors and they completely blew off the redness of her hands and eyelids making me feel a bit crazy (this was all so reminiscent of searching for an FX diagnosis) but my mom stood strong that there was a connection – and there absolutely is.  I appreciate that she took the time off work to go with us.

Scott, Jen, and I (and my mom) all were at Mayo with Allison. This is how our family works. We do everything as one. Like everything with our family - we are all in this together and all love and support Allison. I’m thankful that this is our family dynamic.

Juvenile dermatomyositis (dur-muh-toe-my-uh-SY-tis) (JDM) is a disease in children that causes skin rash (dermato) and muscle inflammation (myositis), resulting in weak muscles. 
JDM is a type of autoimmune disease. The immune system is a group of cells that protect the body from infections. In autoimmune diseases such as JDM, these cells fight the body's own tissues and cells, causing inflammation and, in some cases, tissue damage. 
JMD affects 3,000-5,000 children in the United States – on average there are only 1 – 3 diagnosis for every million people per year.

JDM is a treatable disease, there’s no cure for dermatomyositis, but periods of symptom improvement (remission) can occur. JDM. Most children go into remission within two years and may have their medications eliminated.

However, some children may have active disease longer than two years, and some may have more severe symptoms than others.

Some children with JDM can have repeat episodes of the disease or may have the type of disease that does not easily respond to medications.

It is impossible at this time to predict how your child will respond. The most important thing is to take all the medicine your doctor prescribes and perform physical therapy.

This is not contagious. Her rash is not contagious. Nothing about JMD is contagious.

Despite the challenge’s children with JDM and their families face, the majority of children grow up to lead an active, productive life.

We have known that Allison has been living with significant pain. While we thought the pain was joint pain, it turns out that in addition to the joint (arthritis) pain, there is also significant muscle pain. If you’ve ever watched Allison try to get up from the floor, you know this is a near impossible task for her. We thought it was due to the joint pain, but it turns out this is due more to the muscle weakness. Allison is moderately to severely impacted by JMD. Her muscle weakness is significant which explains why she is so easily fatigued, her weight loss and loss of appetite.

Sun exposure makes this disease way worse. We must keep her covered and soaked in sunscreen. She is not to be in the sun from 10 am - 2 pm if possible but know at times she will be. We just have to be extra precautionary and observant of her during those times. We will be adding an SPF additive to our laundry to help provide more protection in all of her clothes and getting some sun protective long sleeve summer clothes and hats for her. *Allison is personally thrilled that she has permission to wear jeans and long sleeves or sweatshirts year-round* for real. If you know her you know this is basically her entire wardrobe already!

He started her on a high dose of prednisone that we will taper down on but she will be on long term and weekly methotrexate (the chemotherapy drug at a very low dose) injections which she has been taught to give herself.

She has lost 20 lbs in the past 2 months because of this disease, the prednisone steroid will put that weight and likely more back on her. The methotrexate will likely make her sick for the first couple of days but if that continues they will prescribe her Zofran to help with that.

Her immune system will be very low so we need to keep her away from anyone sick and be sure she always washes her hands and has hand sanitizer with her always. I’ve offered to buy her some cool face masks to avoid icky germs 😉

There is a more aggressive treatment regime if this doesn't help we can try if this does not work but 2 days into the prednisone she is already feeling improvements and we have complete faith this is going to be good.

We will be back at Mayos in August and then every 3 months for 2 years – after that, we will know more and how to proceed.

In 2 years when this treatment is finished either she will go into/be in remission (best case) which could last years or months... Or she won't go into remission. If it doesn't she go into remission she will be on treatment, continuously, her entire life.

Her heart and lung images were very good which is very good given how severe and advanced she is – this was a huge relief to us all.

We have a lot of crazy blood tests but all should even out over the next several months. She will be getting poked a lot over her life just to be sure everything stays in check BUT this is treatable so it is all worth it as her quality of life should return to “normal” (whatever that is, lol).

Within a couple of weeks, she should be significantly better with this treatment and back to herself which makes us all super happy! She’s happy to know she will be doing better for her trips in June (one camping with Grandma Colleen and one to Florida to see Grandma Paula) and we are all relieved she will be in much better condition for band camp!!

I'm sure I'm missing something but tried to cover as much as I could. It's been an emotional couple of days and we are all a bit exhausted.  Our sweet baby girl now has 2 rare disease diagnoses <3 We always knew she was very special.

Thank you so much for your prayers and thinking of her! Thank you to ABG, Uncle Randy, and Jeni along with Rylee and Michale and the Advanced Rehab staff for keeping Parker on track, in routine, and well loved and cared for. And my pets <3 We appreciate and love you all.

1: The next CureJM conference is in Chicago (in June – it’s going to take a lot of people helping me and everything falling into place but I will be doing all I can to be able to go).

The first Fragile X conference after our diagnosis (but we did not attend because we did not know about it) was in Chicago. :-O

2. The co-founder of CureJM is a mom, whose son was diagnosed right before his 4th birthday.. his name is Parker. This diagnosis led her to be an advocate and champion.

My Parker was diagnosed with Fragile X right before his 4th birthday. :-O This diagnosis led me to be an advocate and champion.

3. After our Fragile X Diagnosis, we saw Dr. RANDI Hagerman (who we love, love, love!)
Allison’s JMD doctor is Dr. Amir ORANDI (who we love, love, love!)

 Crazy, right?!?


CureJM  We think they will love us <3  If you would like to make a donation in Allison’s honor – please donate to them <3

On the 16th floor outside of Pediatric Rheumatology 

16th floor views

Saturday, May 11, 2019

Hey Momma, I see you. Happy Mother's Day.

Hey sweet Momma,

I just wanted to say “Happy Mother’s Day” and… I see you.

I see you wishing and praying that today – and, honestly, every day – will be the day you hear your child’s voice.

I see you hoping that today you can attend church or a family gathering without a meltdown from the child you love with all of your heart. Because the last thing we want to do on Mother’s Day – or any day – is to be apologizing for our child whose body and mind create a world of challenges for them.

I see the anxiety rising in you as you prepare to leave your home, not knowing if today is going to be a good day or will be one filled with challenges for your child and the judgment you face even on your best outings.

I see you hurting as you scroll through Facebook seeing the posts of homemade gifts and cards, wishing your child had the fine motor skills to create something you know would match the amazing heart they have.

I see you researching treatments and therapies and absorbing every ounce of education you can to help your child live the best life possible.

I see you advocate. For education. For inclusion. For government funding. For federal regulations. For your child.

I see you feel as though you are not enough, that you are missing something, that you have failed, that you are upset for losing your cool, or missing an appointment, or breaking down and crying in front of your child or friend, or loved one.

I see your exhaustion, from today, from thinking about tomorrow, and from planning for the next 40 years… because you have to.

I see you, sweet Momma. I see all of this and so much more and I want you to know that I think you are amazing.

Our lives are different and most days it’s easy to forget that – at least for me it is. I am so focused on “us” and our happy that I forget that not every parent is helping their 20-year-old in the bathroom, helping them cut up their food, or tucking them into bed at night. We live each day the best we can to fill it with as much love and laughter as we can and we just, well we just “live”. We don’t focus on ability or disability; we just focus on each person for the incredible person they are.

Days like today though, the interrupt our normal and remind us that… we are not. And while I encourage my children to strive to be different because normal is boring – living with a disability that your lives revolve around is a bit more than different and it makes days like this an emotional challenge.

For us, today will be filled with traveling and family and everything out of our normal routine and schedule. We have an amazing, loving, supportive family who wants us to be a part of this special day, like all other holidays.  And we want to be there too, with them, and an active part of our family. 

Sometimes that works out beautifully and other times, it turns into days I regret even trying and leaving the comfort of our home. A meltdown is a meltdown is a meltdown but when they happen 2 hours from home they feel more like a MELTDOWN than just a meltdown.

While I love my family more than anything, holidays are a reminder of what I am missing – not just what my son is missing but what *I* am missing. My son requires almost constant attention – and he wants it from me which means sitting and talking to family members, catching up and reminiscing doesn’t happen as I had imagined it would. While it has gotten so much easier over the years, my attention is still 98% focused on keeping my son content and 2% in joining in conversation with my family which is that reminder that our lives are simply not simple or the same.

But, we go. We go and we try and we pray for the best because family is important to us – and we are important to them.

Just as my friends are important to me, which is why I “like” and “love” their social media posts of the incredible things their children accomplish and celebrate with them. And I know, we  - and our accomplishments - are important to them, too.

This Mother’s Day may be another reminder that this little life of ours isn’t like most others and while sometimes that really hurts – at the end of these long days, I get to tuck my 20-year old into bed, let him kiss my cheek and know that more than anything I am loved before having one on one time with my daughter to catch up on her day.  And that, that is a pretty incredible way to wrap up each day.

Sweet Momma, I see you. I FEEL you. I understand you. I am you. I know this Mother’s Day will come with its challenges but I also know that you are so very loved and doing the most amazing job. I wish you the most wonderful Mother’s Day and a reminder that no matter how isolating this life can feel, you are not ever alone on this journey. And believe me, when you look at that sweet baby – no matter their age – that gave you the title of “mom” they love and appreciate you, too. And I wish for you 5 uninterrupted minutes in the shower… because *ahhhh* that is priceless!

And to my children, Thank You! Seriously, with every single ounce of my being (which doesn’t feel like enough) THANK YOU for being the incredible beings that call me Mom. You are my everything and for as long as I am on this earth, I will be here for you; to support you, to encourage you, to cheer for you, to cry with you, and most importantly to unconditionally love you. All I ever wanted was to be a mom and you both made that dream come true. Every single day I cherish that. I love you both.

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!