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.**


Friday, August 31, 2018

Only for Melissa... Water, anyone? #Mionster

Sometimes, things happen by choice – sometimes it’s a matter of life or death. For me, drinking water was life or death.

Ok, not really but it felt like it at the moment and what it led to is truly impressive (for me).

Back in July while the Welins and I were at Niagara Falls, we did a lot of walking and after about 7 miles, we decided to head back for the car to change clothes and grab a drink. Only, here was the thing – I didn’t have a drink. They all had water bottles and I, well, I had not thought that far ahead when we left that morning.

Completely parched and somewhat certain I was going to pass out from dehydration, Melissa handed me her water bottle and told me to take a drink. I hesitated. I do not like water. I never have. My mom will even tell you – even as a baby, I refused water. I seriously do not like it. When I struggled with my eating issues, I would drink water in order to make myself throw up. I am not kidding when I say I do not like water.

I also didn’t want to pass out. She said, “It has pomegranate flavoring.” like that would make it better. I am not sure how I looked at her but in my head, I was sure she had forgotten everything about her best friend, especially how picky I am and “pomegranate” is not part of my world.

She held it out, clearly knowing I was on the verge of death and I took it and, like I would bravely do almost anything for her (it’s BFF code or something), I guzzled it down. And… I liked it, but really, I was going to pass out if I didn't drink it so, of course, I liked it, right?

We finished our amazing day at Niagara Falls and headed back to Mass for a couple of days of bonding which included a day of picture taking, sightseeing, and more walking. Before we left that morning, I asked if I could have a water bottle too. They love me, so of course, they said yes and Eric squeezed in the right amount of pomegranate flavoring for me.  

This was a real test. I wasn’t dying. I was choosing to drink the flavored water on my own, just to see if I actually liked it or not and very, very surprisingly, I did. And that was a game changer for me.

When I returned home, I went to the store to get a Contigo water bottle like the ones the Welins had and then made my way to the water flavoring to find me some Mio to pick up some Berry-Pomegranate and discovered there were so, so, so many more flavors! So I grabbed a couple that sounded Holly friendly and came home with a goal.

It was a mind-blowing goal.

It sounds like an impossible goal. (are there any other kind of goals?)

I decided, without telling anyone, that I was going to give up all beverages except water and (Oh yes, there is an and) AND drink at least 100 oz a day for 1 month.



So, the girl who loves her milk, orange juice, and Sprite and barely drank more than 30 oz a day on a very good day, just committed to giving it all up and adding 70 oz of fluids. 

I’m happy to say that I’ve been mostly successful. I’ve easily reached and exceeded my 100 oz a day. I have found sooooo many flavors of Mio that I love! I’ve even had plain, unflavored ice water when I am out to eat or at the movies. It’s safe to say, Melissa created a Mio-nster!

Yes, I have my flavors labeled. Yes, they go back 4 - 5 deep. Yes, you do see Berry Pomegranate. 


There were a couple of days I had a swig of milk and I had a Mike’s Hard something drink at a wedding but I’m still calling it a success!

I had hoped it would help with my weight. I drink 40 oz to start my day (Orange-Tangerine) before I have anything to eat. I’ve been way better about what I eat, although I was already following what I eat very closely through my Weight Watchers App. It has made it harder to get in enough points each day. I’ve increased my steps on my fit bit and at the end of my 31 days, lost 7 pounds. I was seriously expecting more  - and it briefly was – I had lost 10 but managed to gain 3 back. *eye roll*.

Here is the biggest thing I’ve learned this month, besides I really love my Mio, there is a difference in when you have to pee from drinking random fluids and when you drink water. When you drink water and you have to pee, you have to pee immediately. Not in a couple of minutes. Not in an hour or two. Not when you feel like it but immediately. As in, pray you make it to the bathroom and get your pants down before your body painfully says “nope, I meant NOW.” I have gone to the bathroom more this month than I have in my entire 44 years of life. Pretty sure of that.

While I had some higher hopes for the outcome (perfect skin, awesome weight loss, more energy), I think the best outcome is I have a new habit and it's a healthy one.  I am loving my Mio water, it’s become part of who I am. I love my Contigo bottles and am not sure how I lived without either now.


It’s been a good change, worth the near-death experience to discover 😉

Tuesday, July 31, 2018

Fragile X Awareness... I need more from you.

Hey, did you hear? July was Fragile X Awareness Month!

I didn’t want Fragile X Awareness month to end without saying something though – it’s just been a struggle as to what. I mean, what is left to say? Years ago I wrote Fragile X Facts that continue to be shared today. I share bits of our everyday life – almost daily. Have I said it all? Or am I just a bit burnt out on it all? I’m sure it’s a combination of many things. So, with a few minutes left in July, at least here in Illinois, I’m going for it… I mean, why not?


99% of my friends – in and out of the Fragile X world – can tell you exactly what Fragile X Syndrome is. If you are in that 1 %, a super quick recap would be it’s the leading cause of inherited intellectual disability and the leading genetic cause of autism.

99% of my friends can tell you struggles that come with living with Fragile X Syndrome. If you are in that 1% they would include, but are not limited to, speech delay (we were fortunate it was a delay, some individuals remain non-verbal for life), loose connective tissue, hyper-arousal (super sensitive to all senses – smells, sounds, sights, feels, etc.), sensory processing disorder, low muscle tone, aggression (that’s a biggie), anxiety (another biggie) and cognitive delay.

I’m pretty sure that 100% of the people who know me can tell you every amazing thing about loving someone with Fragile X and their awesome qualities but just to be sure… they have amazing memories, are incredible imitators, they have the best sense of humor, they are compassionate, affectionate – on their terms, and they are always learning. Really, simply put they are pretty amazing individuals, hands down some of the best people I know.

So this is all well and good, and yes, I understand the purpose of awareness month is to help get the word out enough that people who have never heard of Fragile X Syndrome learn about it, hopefully, it will help more people get tested (it’s a simple blood test of our DNA so 99.9% accurate) so they can become educated, find the right professionals, join our awesome FX community and help their loved one reach their maximum potential.

But, I want that every day – all year long. That’s why I write. It’s why I am always sharing about Parker – and Allison – and their journeys through life as both a Self-Advocate and sibling. And here’s the thing, I don’t just want awareness… I want SO MUCH MORE.

Let me clarify. I want so much more … from you. Because I don’t just want so much more – I NEED so much more.

I need you to advocate with me for the future of my son – and this gets scarier every single day. He needs – DESERVES – real healthcare. Real healthcare that is comprehensive and affordable to someone on a very fixed income. Just like you do, he needs this, too. I need you to speak up, I need you to send emails and make phone calls when I put out the information. Because it takes a village.
I need you to be a voice for free and appropriate education (also known as FAPE) and to be sure that seclusion rooms and restraints are not used (or at least used by people who are very, very well trained and used appropriately). I need to know that the school is safe.

I need you to speak up when it comes to inclusion – and guess what? Inclusion doesn’t end when Parker leaves school. Inclusion needs to happen in our communities, in our places of work and worship, in every place that you are – individuals with disabilities should be, too. If they are not – or if someone says they do not belong, I need you to speak up and be part of that change.

I need you to stop using the r-word. Seriously. Stop it. And every damn form of it. Putting another word in front of it and ending it in “tard” is just as insulting so knock it off. And, for the love of all that is left good in this world, stop flipping defending the use of it. If being able to use that word is more important to you that the feelings of other people – I’m just going to say it – you’re a jerk. Stop it. Grow up and find a new word. I’m going to move on before this gets uglier.

I need acceptance. Accepting Parker means accepting him ALL of the time… mid-meltdown when you are truly concerned that he is going to hurt me, through the colorful language he learned from “friends” at school – trust me, he can swear better than you and no, I’m not happy or proud, through the shirt covering his face  in public (or at our house), through it all. You can’t just accept him when he’s happy and having a good day – or moment. You have to accept him all of the time. Not because I said so but because that is how he accepts you. Unconditionally.

I need research and I need it funded. Research is more than a cure. Research is effective treatments and therapies. Research is life-altering in the best ways and we need it now more than ever. The gains in research have been tremendous, absolutely tremendous but there is so far to go and it is expensive. Most of all, we need it. For more information on the latest research in Fragile X visit: www.fraxa.org

Fragile X is our every day which means awareness is our every day. Some days its fun and others it is exhausting. I can’t just go out to dinner or to the store and not be prepared to respond to comments, looks or answer questions. I’m “on” 24/7. I don’t have a choice. It’s part of who I am and most of the time, I like that part of me, other times, I just want to go to the store or out to dinner with my son without having to be on guard ready to fend off glares and comments. We just aren’t there yet.

Awareness is more than a color. It’s more than sharing a post on social media. It’s more than a donation (although those make a tremendous difference so please, keep making them!). Most of all, it’s more than a day or a month. It’s part of life…my life… and I hope… yours too.

Also, it’s technically August here in Illinois now, so… let’s go make a difference and keep the awareness going – because it DOES make a difference, especially when it’s part of who we are.

And if you think you cannot make a difference… read this, The Starfish Story by Loren Eisley. Everyone can make a difference, all you have to do is try.




Monday, July 2, 2018

Just a Little Patience....




Our lives center around the calendar that hangs on our kitchen wall. While Parker has some flexibility in it – the outline of our days is written in what might as well be stone. What isn’t in stone goes on the list we write each morning… going to the store, doing laundry, etc.

When something on the calendar on the wall doesn’t go as plan, it brings a bit of anxiety into our lives. And that was our Saturday this past weekend.

The plan was that Dan and I were going to a wedding while someone came to hang out with Parker (and by default, Allison, who would likely not come out of her room… hello 15) in the afternoon and then when I got home, I would pick up Parker’s friend, William and take the boys to the KARE talent show and dance.

Almost anything could have changed about our Saturday and we would have been fine. But the wedding and the talent show/dance – were the 2 things that were in stone. Changing them would mean disrupting our plans and opening the floodgates of anxiety. Of course, something changed, and I was not going to get to attend the wedding. Add my disappointment onto the change and you could just feel a catastrophe brewing… and I knew it.

To keep us as much on routine as I could we made a new plan. We would drive to Peoria, pick up Dan, drop him off at the wedding, go to Target, pick Dan back up, drop Dan off at the comedy club, pick up William, go to the talent show/dance. Parker thought this was awesome! But was anxious. And I was still disappointed. I knew my only chance of survival of this day and for Parker to have a successful evening was to snap out of this disappointment, tucking it deep inside so he couldn’t see it and feed off of it.

*Before I go further, I am sure you are thinking “Why not just take the kids to the wedding?” It seems so simple and logical, right? ------------------------------ I’m sorry, I had to step away while I laughed hysterically, I’m back.  It’s not that simple. Parker going to the wedding was never part of the plan. He didn’t want to which is why we made alternate plans. Telling him the day of that the plans had changed and now he was going to a wedding for people he didn’t know, that he did not want to attend, that was outdoors in 106 degrees heat, while convincing him that the rest of the day would go as planned – that is simply not how our life works. And the last thing I was about to do was put him in a situation to cause a scene at a wedding with people who barely knew him. I wasn’t doing that to him, to me or to the wedding couple. (Who, by the way, had a beautifully perfect day – I saw the pictures! Ah-mazing!)

He liked our plan of going to pick up Dan. On the drive over, his anxiety was building. I knew I needed to do something. I told him to call Dan to be sure he was awake for us to pick up. He loved this idea – so he called…. and no answer. So, he called again… and no answer. We agreed, Dan was in the bathroom and could not answer the phone so we would give him some time before calling again.

“Give him more time” in the world of Parker means giving him about 2.5 seconds before calling again. In my attempts to redirect him away from calling again – I reached over to tickle his leg… which he did not in any way appreciate but it sidetracked him a bit. Some back and forth joking came out of it and I was happy to see a smile from him. However, as quickly as it started, it was over, and he was ready to call again.

This felt like the right time to talk about patience again.




Me: “Buddy, breeeeaaaathe.”
P: “Deep breaths. That’s what Dan tells me.”
Me: “That’s right. Deeeep breaths.”

*We both inhale and exhale*

P – reaches for the button to re-dial.

Me: “Buddy, patience. Sometimes we need to wait. Waiting nicely is being patient. You can do it. Dan is busy. Let’s wait a little bit. Patience.”
P: “I hate patience.”

P – Reaches for the button.
Me – Reaches over and tickles his leg.

P: Clearly irritated with the entire situation, “Don’t tickle me. It’s not nice.”
Me: “Breathe.” (takes a deep breath) “We need to wait. Remember, we are going to have patience. Use our patience.
P: “I hate patience.
Me: “We don’t hate things.” (I’m such a mom).

Me: (attempting to be super clever) “Buddy, hold out your hand, I have something for you.”

P: Debating holding out his hand for me, unsure of what I am doing.

Me: “Dude, hold out your hand

P: Reluctantly holds out his hand.
Me: Takes the imaginary thing I have pinched between my fingers and place it in his hand.

P: Looking at me like I’ve lost my mind.

Me: “Look, it’s some of my patience, I wanted to share with you.”

P: Freaking out in the car, shaking and wiping off his hand… “EW! Get it off of me! I hate patience! Gross -  get it off!!

Me: Trying to focus on the road while tears are streaming down my face from laughing so hard.

Me: “Dude, Patience is a good thing! Here, let me get you some more.” Reaching to my side to pinch more imaginary patience to share with him and moving my hand towards his…
P: “No way! Don’t do it. I hate it. I don’t want your stupid patience.
Me: Pretending to put the patience on his leg because his hand was too far away. “Do not wipe it off, this is good! Patience is GOOD!”
P: “Don’t do that” while wiping off his leg.
Me: “Don’t you feel like you have more patience now? It feels good. Deep breaths
P: “I’m calling Daniel Patrick.” While reaching over to push the button to call him.

I wish I could say that bought me more than 2 minutes of time but, nope! Sometimes you just need a little patience and sometimes you just need to wipe that patience away and make your call 😉

Maybe next time, I’ll play some Guns N Roses in the background…






Sunday, March 4, 2018

Sharing the Love for DC... and Fragile X Advocacy!

It’s early March and for the first time in many, many years I am sitting alone in the airport on my way to DC. In the years that I have been doing this (please don’t ask me how many, math isn’t my thing, not to mention it ages me), I’ve been fortunate to bring people I love dearly along for the experience.

The first few years I came alone, which was scary as heck that first year, which was probably the very best thing for me. It allowed me to hang out with other parents, clinicians and family members from the Fragile X Community who knew DC pretty darn well and through our late night walks through the city, I fell in love with the place I was once terrified of.

I had been to DC once before with my family the summer between 6th and 7th grade, I think. Our family vacation had taken us from Illinois to Alabama to Florida to Virginia to DC (driving. I can’t even fathom that today!). DC was chaos and scary. The hotel had bullet proof glass at the check-in and easily 5 locks on our door. We were all a bit panicked. We spent hours at the Vietnam Memorial, which was newly opened to the public and the real reason we were there. It was amazing. Breathtaking. Emotional. Gut-wrenching. Heartbreaking. It was all of the feels possible wrapped up into one and left memories of how therapeutic and heartbreaking it was for my dad. It was old friends, with their names on the wall. It was new friends made from the thousands of people that were there, arriving strangers, sharing stories and tears while helping find names on the wall to etch. I don’t remember anything else but I’ve been told we saw other memorials too. I remember my mom wanting to go to the Smithsonian. We took a family vote and decided that we were all too scared to stay in this place any longer. I think my mom’s heart broke a little when we left instead of staying the extra day. Also, something that remained engrained in my mind.

So, safe to say it took some convincing to get me to go back but I did, for Advocacy Work for Fragile X. It’s amazing the things I’ve done in the name of Fragile X with the hopes and dreams of making a difference because, trust me, none of it came naturally to me.

This solo trip flying to DC and meeting up with other Fragile X families I had met through the listserv (It was our social media back in the day) and at conferences – so, while the flights were alone, my time there was surrounded with incredible people who remain my friends today. We walked for hours, truly in the middle of the night as it was the only free time we had, through the city. I saw and fell in love with every monument, truly understanding their beauty and our history way more than before. I also felt safe. Incredibly safe. Between the friends, feeling safe, the sights and the intoxicating work we did on Capitol Hill, I was hooked. I was in love with Washington, DC, it’s history and the work we were doing.

Over the years, I have been fortunate enough to bring my mom with me, multiple times… at least 3, maybe 4? 5? I don’t remember the number as much as I remember how excited I was to walk with her all over the city and see as many of the Smithsonian Museums that we could get through. It was almost a sense of relief, to be able to bring her back and experience DC the way I saw it now and for her to be able to take in all of the sights in addition to doing the advocacy work for Fragile X that I loved so much. She's a natural advocate and her extensive medical knowledge is always helpful in meetings.

Between the times of taking my mom, I finally talked my dad into going with me. I promised him he didn’t have to do the advocacy part, I just wanted to take him around the city. I wanted to take him back to the Vietnam Memorial and show him the beauty that is DC. We had an incredible (and sometimes tearful at the Wall) experience that I cherish. And he totally rocked the advocacy part, too!

The last 2 years though… those have a special place in my heart because Allison came with me. I couldn’t wait to show her the city. She shares my love of history and was as excited as I was. We came for 5 days (both times) and my mom came with to take Allison out in the city while I was working. Last year, we brought her friend, Paige, along too. Sharing the city I loved with Allison and watching my small town baby girl fall in love with the big city experience was incredible. If nothing else would have happened during those 2 visits, I would have been happy. But so much more happened.

While Allison had seen me give a few small talks on Fragile X, she had never seen me at work, or addressing a large crowd, or bonding with other families. She met the people I work with, the families I talk about and was excited to spend the day on Capitol Hill. But, that was just a tiny bit of the so much more that happened.

What happened for Allison in DC was the same thing that happened for me so many years before. She found her voice. She led and did the majority of the talking through many of our meetings. She would explain what Fragile X is, how it impacts her brother, cousin and our families. She rocked the advocacy thing and I could not have been more proud.

During our tour of the Capitol building with Congressman Gregg Harper (who also has a son with Fragile X), she asked him to take a selfie with her. That was a first but not the last. The repeated the selfie on her return trip.




She sat in the chairs of the house floor while learning all about the history, how members cast votes and where Moses can be found. She watched Senate proceedings from the balcony, saw the Supreme Court with a guided tour and took in every monument there is. She has walked through many of the Smithsonian museums, toured the Ford Theater, watched the changing of the guard at Arlington and everything else we could squeeze into our time.

Our time on Capitol Hill gave me a glimpse into the amazing young woman she has become. She’s always stood up for others and is her brother’s best voice. To see her take in everything she has heard over the years and pull it together into gracefully explaining Fragile X to our Members of Congress and their staffers, left me in awe. Saying I was (am) proud of her feels so understated. It was of those times, where I stood back and thought, “You know, maybe I’m not completely screwing up raising her. Maybe her brother has brought as much into her life as his disability has taken away. Maybe, she will be the voice that changes our world.” It’s left me crushed not to have her by my side again this year. 

Missing days in High School is just not something that can be done. It breaks my heart a bit but I appreciate her dedication to her academics.

This year, I fly alone. No mom. No dad. No Allison. Just me. And maybe it’s what I need, again. At least that is what I keep telling myself as I await my final flight into DC feeling like a piece of me is missing.

While I look forward to returning to the city I love, seeing my fragile x family and advocating, a part of me will be wishing she was here and hoping she knows through the 8 million times I’ve told her how proud I am of her. I know it’ll be a great and productive visit but, I’m also 100% sure that I won’t meet anyone who shares her love and excitement for riding the Metro, Caleb excluded.


I miss you, Lou (Allison). I hope I am able to carry your voice through to our meetings until you can return with me again. I am so incredibly proud of you!!!

Saturday, December 23, 2017

Coco... and the most beautiful things.

I wanted to write this as soon as we returned home from the movie… a couple of weeks ago, but life – it tends to have other things it wants to consume my time with. The upside to the delay is I’ve thought of these moments every single day since each time warming my heart a bit more and reminding me of the truly important things in life. I hope it will you too.

Parker had been begging to see the movie Coco, so we took our first opportunity we had to take him. Rarely is our life ever as simple as “here is the plan” and it happens exactly accordingly despite our best efforts.

The kids and I drove over to the comedy club to pick up Dan, we were early as we wanted to catch the Bears game and Joe the drum guy was coming to pick up his drum set that Greg Hahn had used during his shows that weekend. Not to mention football is way more fun with more people around!
After the game, we said our goodbyes to Joe and were off to the theater. It was a bit later in the day than we planned (because *someone* *cough* *mom* miscalculated the time the game might end) and the Bears had lost so to say we were “edgy” is an understatement.

When we arrived at Willow Knolls, Dan bought tickets while the kids and I went to the concessions stand. As I scoured the menu I didn’t see the one thing Parker wanted… a pretzel. I was sure they had them but through the flashing menu of items (seriously annoying), I never saw it. So we ordered Nachos (no cheese, he is MY son) as our back up. As I paid for the food and passed it out, it hit. Anger. Frustration. Verge of a nasty meltdown. He “didn’t want the damn nachos”. 

I quickly passed things to Allison with the instructions to move down to the end of the counter, protecting anything from getting thrown. I held strong my space in line as I walked through every other option with him despite the cashier (understandably) wanting to help who was next when Dan made his way to us.

Each time I’d step closer to Parker, he’d get more upset. As I glanced around at the number of people (about 15) I mentally prepared myself for the ugly and likely physical meltdown that was about to go down when Dan stepped in between us and reached for Parker. I held my breath anticipating the worst and prepared to offer the option of going home when Dan reached his arms around Parker and they embraced in a super squeezy hug. Sniffles ensued from Parker as Dan quietly and calmly talked him through it.

The manager approached me, asking if he was autistic. I said, “He has Fragile X Syndrome which is very similar” while he was talking I kept scanning the menu board rotating with options when I noticed a couple of screens down “pretzels”. Annoyed that not every option is on one screen, I excused myself and stepped over to the counter and ordered a pretzel. When it arrived, I walked over to Dan and Parker and said, “Look what they have!” And just like that, our world was right again.

The manager, whose name I am disappointed I did not get, had offered to turn the sound down on the movie for us and keep the lights up even though we were not the only ones attending the movie to make it more comfortable for Parker. I thanked him so very much for the offer but explained this is why Parker had his headphones and we would be ok. I thanked him, again, for his help and patience and we hurried to the movie. While I thanked him at the moment, I would have loved to have gotten his name and thanked him more formally for noticing and not being put off by our challenge but offering to go out of his way to make it better. To thank him, for understanding and accepting us, challenges and all. I am so thankful and grateful. That is not always the response we get, it was a very refreshing change. 

As I watched Dan and Parker walking down the hall in front of Allison and me, I fought back a couple of tears. I knew if Dan had not been with us, this would have ended completely differently, and we would not have made it to the movies. As I’ve done many times in our relationship, my heart filled with extreme thanks for him and his bond with both of my children. I also knew that we had not yet made it into the theater so going home without a movie was still a possibility. The lights would be down as we walked in and we would need to find our seats in the dark. It was an “I underestimated the power of Dan” moment as Parker followed Dan’s instructions to walk quietly in and find their seats with an outstretched hand to hold and offer comfort.

With one preview left, we made it to our seats without missing a thing!

I honestly did not know anything about the movie as we walked in other than Parker really wanted to see it. I knew it involved dead people and spirits and it was animated but that was the extent of my knowledge. Oh and that Allison was annoyed it didn’t come out closer to the day being celebrated in the movie 😉

I don’t want to give much away about the movie because I think you should go see it yourself, as it is one we highly recommend, but I need to give a tiny bit of details on what it was that made this movie experience like no other for us. (Even though I want to tell you in detail everything about it – we enjoyed it that much!)

The overall point of the movie is about remembering loved ones who have passed and what happens when no one is left to remember them. It’s about family and memories and keeping “alive” those who have passed. (among other things that are more upbeat and fun).

As we sat watching… Allison, Dan, Me, Parker (in that order) … there was a part of the movie where the little boy was trying to get his great-grandma to remember her father. She was very old with not much time left herself. She had not spoken that I could remember during the movie to this point.
As the little boy kneeled by his great grandma’s side begging her to remember someone, knowing what would happen if she did not despite his family telling him to stop, I noticed out of the corner of my eye Parker raise his hand. As I looked over I noticed he was wiping away tears. With tears in my eyes I nudged Dan and with that, the 3 of us were wiping away tears.



I have never seen this from Parker. He gets very into movies we see in the theaters and shows his excitement and even concern, often asking questions if he wants to know what will happen but this time… this was different. There was no talking. There were no questions. Just tears. Tears of understanding the importance of the great-grandma remembering her father. Tears of understanding they would never be reunited if she forgot him.

I kept saying to Dan “He’s never done this. He’s never cried at a movie. He’s never been touched like this.” Dan already knew. Together we cherished this incredible moment. A moment I knew would have been missed without Dan by our side and a moment, as a mom, I needed to see.

Tears. Understanding. Emotion. From my 18-year-old son with Fragile X Syndrome.  Very intently watching, waiting and encouraging her to remember. It was one of those moments impossible to put the feelings of into words but something you felt with every ounce of your being.

I won’t tell you what happens next, but I will tell you that as soon as this movie is out on DVD, we will be buying it. The message is incredible, the story very well told and the memory of the impact it made on my son… tremendous.

I will say the overall point of this movie, which taught me something significant about another culture, was the importance of not just remembering those we’ve lost but always telling their stories, keeping them alive not just our memory but in the memory of other generations – even if they did not know of them. I was not familiar with the Mexican tradition of the Day of the Dead but find it incredibly beautiful, meaningful and am a little confused as why we don’t all do this. I know we all remember, daily, in our own ways but a special day to focus on those we love in a big way… that’s truly beautiful.

My reminder to you, keep sharing those stories. Keep the passing down the stories, the pictures, the memories from generation to generation. While no one knows what comes after life has ended, we know our love never ends. It doesn’t have to stop with us, keep your loved ones who have passed alive for generations to come, not just because they deserve to be remembered but because we are all better for knowing and celebrating those who were here before us.

And my reminder to me, my daughter is an absolute rock star who can understand our needs with very few words from me. While I hurt that this is her “normal” to see the possibility of our plans change on a whim, her understanding, empathy and ability to handle things – including disappointment – is well beyond her 15 years. She is my rock star. My son is always full of surprises, his ability to adapt and regroup has grown by leaps and bounds. And what’s going on inside of that mind of his that we don’t always understand or anticipate is never to be underestimated. And of course, that our life with Dan is something that was meant to be. To have someone who is unfazed by a public meltdown and even better able to prevent it from going full meltdown with the ability tell me to step away and let him handle it is something dreams are made of and more truly what unconditional love looks like. And to myself, the hardest thing of all, it’s ok to trust someone enough to help Parker through his challenges and step away until they are ready for me. (Thanks, Tim – “line 2”).


Because of all of this… leads to amazing and unpredictable moments that forever touch your heart. 

This holiday season and always – take the time to remember share those stories. Keep the memories of our loved ones alive. Without them, we would not be who we are.

And really…. Go see Coco!


Friday, November 24, 2017

Giving ThanX

I’ve been “writing” this in my mind for a couple of weeks. My plan was to pluck it from my mind on Thanksgiving, put it into my blog and share it with the world. Then, life happened. Including probably one of my top 3 worst parenting moments followed by ringing ears and a massive headache leading me to bed by 6:30 pm.

Let’s be fair though, when I say “life happened” it means “Fragile X came out for a visit and won” robbing my sweet 18 year old son of his laughter and happiness and replacing the best of him with demonic yelling and full-fledged anger faster than early bird shoppers ransack a store on black Friday. If you want a blog on the ways living with fragile x can suck, I can likely write you a new one daily, on some days a new blog hourly. But… that’s not what I’m writing about today, nor is it what I want to write about or discuss – at least right now.

I want to share with you the reasons I’m thankful to have Fragile X in our lives. Yes. There are things I am thankful for. Every day.

Just like with everything in life, it’s easier to focus on the negative. “I don’t have enough money to pay my bills” versus “I’m thankful I have enough food in our cabinets to keep my children fed and the power on.”

It can be easy to look at my life and think “My son can’t adequately communicate with me.” Or “My 18 year old son still needs assistance in the bathroom.” Or “I wonder if that last meltdown left me with a concussion.”  Yet, it’s not that way at all. In fact, it’s the very opposite.

While I do not wish this life on anyone, I do appreciate every single inch stone along the way (think “Milestone” only smaller and celebrated in much bigger ways) and see the “perks” to the life we live. Most of all, I reflect daily on the amazing parts of each day and my life and realize  - even when  do not get it all right – I’m pretty darn lucky to live this life.

Because, Fragile X, in many ways has been a gift. And for that, I am thankful.



While the most obvious is my children who are truly the Rock Stars of my universe, there are is so much more!

For example, my very best friend in the entire world. If it were not for Fragile X, there would not be a Melissa and Holly (gasp) just take a minute to let that sink in! Some people go an entire lifetime without having someone they can trust with their entire life, who will lay in bed with a computer screen on facing them with Skype on so that they can be there to fall asleep with you on your most challenging days while you cry yourself to sleep because they live too far away to be there in person. Melissa is just that. She is my person. She is the one who has no trouble reminding me that I am only a superhero in our tattoos, not in person. That in person, I am human. I’m allowed to make mistakes, I’m allowed to say no, I’m allowed to stop and slow down and I’m allowed to be …human. (not as easy as you would think – and quite honestly, I doubt I would believe anyone other than her.) She’s the one I admire, the one I plan to grow old with and the one who I’d trust my children to. She’s the one I waited over 30 years to find. I am thankful, beyond meaningful words, for her. And her family, they are a package deal and I adore them all.

I am thankful for my close knit group of Fragile X moms who span the globe. You know who you are 😊 You are the ones who get late night emails, who know that pizza can be worth celebrating, who will try to fit yourself in a suitcase so we can be together. You are my sounding board, my mentors, and my reminder to believe in me. I am thankful for each of you.

I am thankful for this crazy family I had no idea I was a part of until 2003 – my Fragile X family, filled with the most amazing information, the occasional spike of drama and best of all unconditional acceptance and love. From IEP’s to Guardianship to Independent Living you are blazing new trails and pouring cement on the ones already paved. We celebrate together, laugh together, cry together and mourn together like only this specially bound family can, always offering unending support. We learn so much from each other and support each other in ways a family should, all thanks to one common gene mutation. I am thankful for all of you.

I am thankful to be a part of the Special Olympics family. Without Fragile X, I would not have known of this tremendous organization and the opportunities they provide. I’ve witnessed true sportsmanship, pure competition and the greatest support for every single person playing – plus gained my Special Olympics family. I am thankful for these experiences.

Because of Fragile X, I’ve been able to travel quite a bit throughout the US and even to Canada, sharing our Fragile X journey and empowering others. From our local schools and colleges to universities packed full for a lecture – I’ve been thankful to have the ability to make a positive impact on others by sharing a piece of each of us. I never knew I had this independence inside of me (me, the small-town girl who had never checked herself into a hotel, hailed a taxi or attempted to navigate public transportation can now do it all!) and I am thankful to have discovered it. I never knew how much I would love traveling and now can often be found daydreaming of places I’d love to visit. I am thankful for these opportunities where not only have I been able to help others but have also found strength and something new about myself.

I am thankful for the patience and negotiation skills that Fragile X has given me. While not always perfect, I certainly have come a long way – and for that I am thankful.

I am thankful for the humor that Fragile X brings out in my kids. From Parker’s slapstick humor to Allison’s sarcasm it truly is the greatest and keeps laughter front and center in our lives.

Of course, I am thankful for my family who love and support us. While I believe that goes without saying, it’s always better to say it. I am so very thankful for my family.

Fragile X has brought out the best in our community. From the incredible friends who surround my children to the business who support our fundraising to the people who are always here to learn more and do anything for my kids – I am thankful. You remind me on a regular basis of the very best our world has to offer and do so effortlessly. I am incredibly thankful for this amazing community and all who live here.

I am incredibly thankful to the teachers, para-pros, therapists, and all employees of our local school district who have put their hearts into making sure that my children have the most appropriate education – who have gone above and beyond and who remain a part of our lives today. Honestly, it started with the birth to three program and our educational/therapy family has only grown since those earliest of days. I am truly thankful for each of you, your dedication and commitment in professions that are always underappreciated. Each of you are the ones who deserve to make millions. Did I mention yet that I am thankful for each of you? Because I am. And without Fragile X, I would have never known of your amazingness – another reason to be thankful for it.

I am thankful for the extended family’s who have welcomed us in and consider us a part of their very own. Both Jen’s family and Dan’s family have welcomed our crazy Fragile x lives into theirs, embracing us as though it’s exactly where we belong… possibly because it is. You never looked twice or reconsidered, you just loved us, Fragile X and all – for each of you I am thankful.
Fragile X has made me who I am today. It’s hard not to be Thankful for that. Fragile X has not only brought 2 amazing children of my on into my life but thousands of others who I love dearly and have the privilege to watch grow up – all around the world, holding a special place in my heart for each family.

Fragile X has given me strength, knowledge and an incredible invitation into a world I did not know was there, filled with dedicated (and seriously awesome) professionals (who I am also thankful for), amazing families and the best self-advocates in the world.

Fragile X has taught me to be an advocate, provided me with patience and reasoning that extend beyond our home. It has provided more education than any school could into topics I did not know were even a part of anyone’s life while reminding me it’s ok to fail as long as I try again.

Fragile X has given me my voice and the ability to not only be the voice of others but to teach people how they can have a voice and make a positive difference too. That’s a pretty strong gift that I’m incredibly thankful for.


Yes, Fragile X has “taken” things from our lives that we will never get back and there are moments it’s easy to let that weigh me down – finding reasons to be Thankful for Fragile X are always there to make the day brighter.

#GivingThanX
#FragileX