Friday, January 11, 2019

Adult Friends, He Still Needs You.

Dear adult friends of my son with a disability,

He still needs you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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









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

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

With love,
Parker’s mom


Wednesday, December 5, 2018

Routines change, sometimes with a smile!


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

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

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

1.       Let Daisy outside to potty.

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

3.        Let Daisy in and feed her.

4.       Check the calendar and review the day.

5.       Give Parker his meds.

6.       Take my meds.

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

8.       Deodorant and brushing teeth

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

10.   Birthdays (Facebook)

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

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

13.   Take Parker to school

All of this happens in about 20 minutes.

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

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

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

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

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

·       We are still adjusting to the time change.

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

·       He was low on Goldfish.

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

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

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

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

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

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

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

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

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

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

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

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

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


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

In the school!


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

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

Happy Wednesday my friends!




Wednesday, November 21, 2018

I won't apologize for this.


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



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



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


Friday, November 2, 2018

An IEP through the tears of mom


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

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

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

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

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

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

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

I cry.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is where the tears mostly stop.

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

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

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

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

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

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

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

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

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



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

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

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


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…