Tuesday, December 14, 2021

You do not know how I feel.

I'm going to apologize in advance. I'm going to rant for a moment.

“I understand how you feel.”

Can we stop with that phrase, please? It’s always bothered me and today, it pushed me to a bit of a snap on an unexpecting person – so I’m just putting it out there for the world. Hopefully, it will prevent someone else from getting snapped on. Maybe.

I received a call about Parker’s annual PUNS list renewal. For those not in IL or not in the disability world PUNS is the state's assistance to help individuals with disabilities. It’s a damn joke, too. Parker has been on the list since he was 8. Every single year we go through the renewal process because if you don’t, you get moved to the bottom of the list (that never seems to change – we’ve always been at the bottom).

It used to be they came to your house once a year to see if your child still had their disability  - because sometimes it magically disappears, you know – and you filled out all of the paperwork together. Because you know what is awesome when you have a child or children with special needs? Having strangers in your home talking about you and your parents not able to share the joys you bring but focus on the challenges and reality of what you cannot do. It sucks for everyone and on top of it, you are trying to keep your kid from being overwhelmed by this stranger who is taking all of your attention and upsetting the balance in your home and your schedule. Thanks to Covid – this is now done over the phone – and I could not appreciate that more.


Except, it’s a random call. You don’t know when it is coming and, I don’t know about everyone but *I* need to brace myself mentally for these discussions or they break me. The irony of this call coming unexpectedly today was I had a call with my dear friend, Karen, earlier in the day about services in other countries and how you have to focus on the negative or no one will help you. And, if you are on the PUNS list, even with the negative, no one will help you.

So, that is where we were. An unexpected call for me to review and discuss all of Parker’s challenges, the fact that he will forever need 24/7 care, and the ugly bits that I don’t always share. I shared that Parker had aged out of the school system and we are looking at the next steps but Covid has put a wrench in that at the moment. Part of survival in the special needs world is knowing and accepting the reality without dwelling on the challenges but instead building on the positives. You have to, or you won’t survive. I have to, anyway. I share the challenges but I love sharing the joys so much more.

At the end of our call, when I was already a bit annoyed, I said, “Just out of curiosity, will he ever be pulled from the list to get services, or are we just going to keep killing trees with renewal paperwork every year until I die for no reason?”

She said, “Well, yeah, eventually – after he turns 18.”

I paused and said, “He’s 22. He’s aged out of the school system.”

She said, “Oh, yes, well then after you turn 18 it is usually about 5 – 7 years.”

Me… now annoyed… “So the 10 years we did this from 8 – 18 was pointless. It will be 5 years in May since he turned 18. He needs services. We’ve been requesting them for over a decade.”

She said, “I understand how you feel.”

Me.... quick internal debate on what will come out of my mouth next.

I said, “No you don’t.”

She said, “Yes, I do. I know exactly how you feel.”

I should have said “ok or thank you” and hung up and there are times, I’ll do that. Today was not that day. Not even close when she insisted, she knew exactly how I felt.

I tossed out the question I knew the answer to based on her not knowing that 22 was when you aged out of the school district… “Do you have child or children with special needs – of any age?”

Her: “Well, no, but I understand.”

Me: “Do you have family members with a disability of any kind?”

Her “No, but I really do understand how you feel.”

Me: “Are you a single mom? Or have you ever been a single mom?”

Her: “Well, not but I really do understand.”

And this is where I snapped.

It’s impossible. It’s impossible to know how I feel when you have never been in my situation. You’ve never raised a special needs child at all, let alone as a single mom. You don’t know what it feels like to do the same paperwork year after year after year for what feels like nothing. You don’t know the worry I have for the future for my son who needs round-the-clock assistance. You don’t know how hard it is to talk with strangers – or even friends – about the challenges your child faces. You don’t know how much an unexpected phone call for you to go through a list of your child’s challenges and needs hits you – so hard. You don’t know. You can’t know. So please, do not tell me that you know.

I went on to say… you can sympathize, you can be empathetic, you can understand being frustrated at a system that is failing people – even though it doesn’t personally impact you, but you cannot in any way understand how I feel.

She mistakenly told me she can and she does understand how I feel.

I paused. 

I reminded her that she has never once in her life walked in my shoes. Never. For that reason alone, you cannot know how I feel. It literally is not possible.

To which she replied with the instructions on how to return the paperwork.

Please don’t do this to people. 

There are things in life that I don’t know how it feels – some that I’ll never know and some that I’ll eventually know but thankfully haven’t experienced yet, like the loss of a parent. I don’t know how my friends who grieve the personal losses of parents or spouses or a child feel. I don’t know how my friends who have been diagnosed with cancer feel. I don’t know how people who have gifted children feel. I don’t know how my friends who can’t have children feel. I don’t know how leaving your child at college hours away feels. I don’t know how it feels to learn that your child is getting married or having a baby. I don't know how it feels to have a child or spouse in the military. I can’t know these things because it’s not the world I live in.

It doesn’t mean I can’t be there for them. It doesn’t mean that I can’t be a shoulder or offer help or feel hurt or happiness for them or celebrate or cry with them – but that is different than “knowing how they feel” and it is disrespectful for me to insinuate that I know… positive or negative. 

We can be amazing and supportive to friends, family, and strangers without "knowing" how they truly feel. We can and we should. 

So, can we please stop that? Can we please get rid of that phrase?  

I appreciate your love. I appreciate your support. I appreciate your friendship. I appreciate you. I value your role in my life. But please do not take that as you know how it feels to have a 22-year-old who still needs help in the bathroom when your kid is graduating college, working a full-time job, having a baby, buying a house, traveling the world – because you don’t know, just like I don’t know how you feel. I can’t even imagine; it is simply too foreign to me. If you do have a 22-year-old who still needs help in the bathroom, you can totally say it, you understand that. Just like my friends whose kids are away at college can relate to each other with their feelings because they both experience it. I can be part of the conversation and love to be but I can't "know" how they feel.

We can be there for each other in this world without honestly knowing and understanding how someone feels. We can learn from them, we can support them, we can celebrate with them, we can mourn with them, we can worry with them – without understanding exactly how they are feeling. And we are better for doing that, for just being present and acknowledging how *they* feel without injecting yourself into the situation.

Please don’t discredit what someone else is going through by saying you “know” when there is no way you can. Trust me, I’ve discussed this with other special needs parents – my response was mild compared to what many of us are thinking but hold back on saying.

I understand this lady was trying to comfort me but it did the opposite. She can’t relate to my life but that doesn’t mean she couldn’t be supportive. She could have said, “I imagine this is frustrating” or “I wish there was something I could do” or “I am sorry that the system is so broken” all of those things validate my feelings and frustration – but telling me you “know” and you “know exactly” when you have no clue what my life is like is simply disrespectful.

We can do better people.

I can do better about not snapping. I can. Part of me wants to, the other part of me feels old and exhausted and just wants to have a conversation without having to help someone be a better human. But I know I can, especially since I need to work on being a better human, too. I really do.

That’s it.

That’s my rant.

That’s my request. Please think about your words. They do have an impact. 

Monday, November 29, 2021

Willow Wishes

There isn’t a Willow without a Parker. I believe almost every dog has an incredible ability to sense when something is wrong. I’ve seen this with many great dogs. And, like Willow, I’ve seen some even respond appropriately to help in those situations even though they have not had any formal training.


When Willow joined our family, I was anxious… anxious on if she would or could bond with Parker. I truly needed her to for this to work seamlessly. (We would have made it work no matter what but seamless is always preferred!). So when we went to pick out our sweet girl, I let the puppies do the picking.

I watched as they all ran toward Parker, until he started to jump and squeal with his hands close to his face. When that happened all of the puppies, but one turned and made a beeline to A. That one puppy, though, with the green collar with markings, she didn’t stop. Instead, she ran right to him, he scooped her up and told her how much he loved her while I quickly checked the collar. We passed her around and put all the puppies back down to play. She stayed closest to Parker. She knew. She knew she was up for this “job” of caring for him, of making his life easier and she hasn’t left his side since that day that she picked him.



Willow knows when Parker is stressed or anxious. If she isn’t already by his side, she goes to him and doesn’t leave him until he is ready for her to go. Even when she is at her most favorite place on earth… Grandma and Grandpa’s house.

Recently during a visit to Grandma and Grandpa’s, Parker abruptly decided he was done, which is usually how Parker decides he is done – abruptly and aggressively. Willow stopped playing with Jessie (their dog) and looked at Parker, I pointed to him and she went to him. She really wanted to keep playing with Jessie but she stopped with that nudge and went to her boy where she knew she should be. She jumped up on the couch with him, laid on her back across his lap and lifted her nose to his face to give him kisses. When he was calm, I asked him if he wanted to wait in the car – knowing it would still be a bit before we left – he said yes. He went to the car and without me saying a word, Willow followed.

Together they sat in the car listening to music until we left. Twice I tried to get her to come out and run one more time, both times she refused. Until she is sure he is ok, she won’t leave his side. She’s a year and a half old – that’s pretty dang amazing to me.



I have the honor of watching these two every single day. Every day, I’m amazed at the difference they make in each other and in awe of their bond.












I sometimes wonder what Willow thinks about beyond how much she loves her boy. She’s happy, she’s spoiled, she’s extremely loved – and I think she knows all of that. I wonder when she sees people look at her boy what she wishes they knew about him and from that Willow’s Wishes came to be.



This is what I believe Willow wishes you knew.

Willow wishes you could see beyond his disability, like she does, straight to his heart and soul to see the incredible guy that he is. Then you could see how much his heart loves, even when he cannot express it and how much it breaks when he can’t say or do things he wishes he could. Things people take for granted, like independence. Parker needs someone with him 24/7.

Willow wishes you knew how much he loves others. If you are someone important in his life, never take that for granted. That list is short, and those people are treasured. If you make that list, he doesn’t have high expectations, but he knows when he has been forgotten. It’s hard as friends get older and move forward with their lives. But it’s not that hard to check in, to drop him a text, call him on messenger, or stop by and see him. If you think that’s just too much to ask, Willow wishes you could live in his mind and body for just a day because then you would realize this is the smallest of requests and understand how much he notices when you stop responding to him.

Willow wishes you knew that his laugh is the best! It is pure and it is contagious, truly one of the greatest sounds.

Willow wishes that you knew his struggles. She wishes you knew the amazing difference her plopping her 90 lb body on him makes when he is overwhelmed to help regulate his body and senses. She wishes you could feel the release of his tension when he is mid-meltdown and she puts her nose in his face, distracting him with kisses until he is ok. Like he is holding up a falling building on his shoulders and Hulk comes in and lifts it off of him, freeing him from that weight – that relief is felt by Willow every single time. She wishes you could feel the difference in him when that weight it lifted and how he relaxes when the tension leaves his body.

Willow wishes that as much as she sees her boy as perfect, she could see him enjoy life every day without the significant struggles he faces.

Willow wishes you knew that being 22 but functioning as a young child is a challenge every single day that you can help change.

Willow wishes that you understood just how incredibly hard life with Fragile X syndrome is every single day for her boy. Every day there is a challenge. Every day takes effort. Every day has laughs. Every day has frustrations. Every day is exhausting. Fragile X syndrome is the leading cause of inherited intellectual disability and leading genetic cause of Autism and it’s hard. It’s really hard.

Willow wishes you knew she loves naptime with Parker as much as she loves running at the park with him.




Willow wishes you knew that every night when Parker goes to bed, he yells “Goodnight Willow, I love you” and that it is the sweetest thing ever.

Willow wishes that you understood the fear that I have each night when I go to bed about what the future will bring, that no matter how much I plan that it won’t be enough. That I worry about who will love him unconditionally as I do when I am gone.

Willow wishes you understood that while she is very young, she won’t be here forever and that is just one of many reasons why she needs your help.

Willow wishes that you knew that the key to Parker’s independence and his future is in funding Fragile X research. She wishes you knew that clinical trials are showing amazing improvement in adults older than Parker.

Willow wishes you knew that an effective treatment for Parker IS realistic, and it will happen. How fast it happens depends on all of us.

Willow wishes you knew how important having that available to him is to her and to our family.

Willow wishes you knew how important her boy is to her, that she loves Parker more than anyone – even Grandpa. Willow wishes you knew how much she wishes she could enjoy life with him without his struggles so they could do even more together.

Willow wishes you knew that while his language isn’t perfect, his mind isn’t perfect, his life isn’t perfect… his heart is and just as he would do anything for you she hopes you will do this for him.

Willow wishes you knew that FRAXA is accelerating that research at an amazing pace and they need your help.

Willow wishes you would make a donation to FRAXA Research Foundation in honor of Parker – or in honor or Willow and Parker today.

If you donate to FRAXA on GivingTuesday (11/30/21), donations up to $50,000 are being met with a 3:1 match, quadrupling your impact! 

If you donate during the Annual Appeal, it will help them meet their end-of-year goals. 

If you donate monthly, you can know that every single month you are helping the researchers get closer to that effective treatment that will change Parker’s life. 

No matter what time of year this message finds you, you can make a difference by donating at fraxa.org

Willow wishes that if you are not in a position to donate that you will share her love for Parker and hope for his future with your family and friends.

Willow wishes you knew how much this means to her and that she can’t wait to share more of their adventures together with you.


Willow wishes you knew that just as she makes a difference in Parker's life every day, so you can! You can make a difference in his future by supporting FRAXA who is funding research that will lead to effective treatments and ultimately a cure for Fragile X syndrome. 

 

 

Monday, November 15, 2021

Unbreakable Bonds.

 Sometimes writing helps. Sometimes writing hurts just as much as it heals. This hurts. That is your Kleenex warning.




I’m starting at the beginning. If I start where my heart is we will never make it through this.

30 years ago while my sister, Dawn, was attending Northern Illinois University she called my parents to let them know she bought a horse. A yearling to be exact. While living in DeKalb and going to college, she made the awesome decision to buy a horse that she would need to board, train, and could not ride. To say that everyone in my family had the best discussion of how my “could do no wrong” sister, the oldest of us 3 girls just made the most ridiculous purchase is an understatement. To this day, I treasure how much my parents shook their heads at her for this decision, it was pretty awesome for the younger, frequently making ridiculous decisions version of me, to witness.

That is the story, that I know, of how Cochise a.k.a. “Crazy Horse”, became a part of our family. I’m sure there are details that Dawn remembers that led her to Cochise but they are not as important to me as the memory of everyone saying she lost her mind.

Cochise, who we usually referred to as “Chise” eventually made her way to my parents’ house. She was trained. She went through her squirrely years and finally, matured into the incredible horse that we all fell in love with.

Chise was always gorgeous. Her mane and tail gorgeous combinations of blonde, brown, and black hair that always lightened in the summer like it was soaked in Sun-In (I’m aging myself). When A started riding independently, Chise was the go-to horse. Chise would be the most rotten mare for everyone else but the second A was on Chise, a new horse emerged. Chise loved A and was the best version of herself anytime A was on her back.

As Chise aged arthritis crept in, something A and Chise had in common – bad joints. 

A showing off their bad joints.

A would ride Star more often and Chise enjoyed retirement in the pasture. When we love in our family, we love forever. Animals don’t “age out” at our house, they don’t become useless or without purpose when they are old. They retire and are given their best life for all of the years they gave us so much joy. It’s been a few years since anyone has ridden Chise. Last year when we knew our time was limited, A spent some time on Chise’s back while in the yard. It was fitting for A to be the last person to ride her.






We let A know last year that we were not sure how much time we had left. After A lost their great-grandma Lovadee, followed by their Grandpa Gordon and Grandma Paula last year – my mom made the decision to wait. She felt Cochise was doing well enough and that we could keep her comfortable enough to make it through the winter… then spring… then summer. But, we knew she couldn’t make it past fall of this year.

Once again, we broke the news to A, that this time we were truly out of time. We did not want Chise to ever suffer, and there was no way for her to make it through the winter without suffering. We just couldn’t do that even though we wanted to keep her here forever.



The past 2 weekends, I’ve taken A home to my parents’ house to spend time with Chise. In the nice weather last week, they spent time in the yard, Chise eating green grass while A loved on her and thanked her for all of their years together.







Yesterday, the weather was not great for being in the yard so A and Chise spent hours in the barn together one last time.

It’s hard to say Goodbye. It’s hard to let go. Even when you have a date and time, saying Goodbye never gets easier. We are thankful for knowing, thankful for the ability to have one more goodbye. It’s never enough but we were thankful to have it.

Chise has been a part of our family for almost 30 years. That’s a long time to love anything, a person or an animal. For A’s entire life, Chise has been a part of my parents’ place. They’ve covered hundreds of miles of trails together in multiple states. While this goodbye hurts me, this goodbye has devastated A. Nothing hurts more than seeing your kid hurt.

While A hurts, I’m thankful for the memories and there are thousands of them for these two. I’m thankful for the experiences they shared, for the talks between the two of them, for the sense of peace Chise brought to my baby.

Today, Chise was laid to rest. She took her final breath with my mom by her side. She knew she was loved, we all told her, we all thanked her, we all appreciated the years we had together.

As thankful as I am for the amazing memories A has with Chise, I’m also thankful for being able to remember that insane decision my sister made and enjoy the laugh that brings me… even if it means she knew something then that we couldn’t see but appreciate now.

Go run the pastures of Heaven, Chise. We are glad you no longer hurt, we miss you already, and thank you for the past almost 30 years that you were a part of our family. You’ll be missed and forever loved.










Monday, August 23, 2021

The moments that make you think.

Parker has been doing this thing for the past couple of months where he wants to take a nap – well, he wants US to take a nap, with Willow in the “big bed” (my bed). I’m not going to lie, after 22 years of this boy not sleeping, I’m all for a nap whenever I can get one! It’s been a nice adjustment to many of our days.



It also means that I slow down. I’m not given an option but to stop during this time. Stopping isn’t something I do easily, or, honestly, something that I do well. When I do, the million tabs that are open in my mind constantly running to-do lists and ideas through my mind laser focus on one thing – that sweet young man laying across from me, on the other side of the 90-pound dog.

As I lay there in the dark (I have room darkening curtains, it is dark!), with my eyes adjusting to see the sweet silhouette of his face as his sleepy eyes fight to stay open with blinks that get longer and longer until they stay closed. As his eyes close, warm tears flood down my cheeks from mine, this is what happens when I stop. I look at him and think of all of the things I wish I had done for him. I think of the wisdom I have now that I wish I had when he was little. I think of everything I wish I could have known to do and wonder how much different his life would be today, or would it? I’ll never know.

Through my tears, I don’t see a 22-year-old young man, I see my sweet young boy. I see his innocence; I see the world differently and I can’t help but wonder… have I done enough?

I wonder if I’ve prepared him enough for the next phase of his life and how much COVID has set us back on that plan. (Our timeline remains the same, he’s just much more attached to me after a year and a half of being joined at the hip, so we have some independence to make up.)

There is time. I remind myself there is time but with each passing day, we are one day closer to this new chapter in his life. In my life. In our lives.

I wonder what our lives will be like when I’m not here to care for his every need, every day. While I hope that I will have him prepared for that, have I prepared myself for what my life will be like? And what will it be like? Besides being extremely quiet. And will we be ok? In all fairness, will I be ok?

I am sure that all parents go through this when their children leave the nest, but as a special needs parent, my nest is a bit different than some. While my friends in the special needs community can relate, my friends who are not but have watched their children move onto the next phase of their life never were in my position where someone depended on them 24/7 to get through their day. Parker will always need assistance, a round-the-clock caregiver, and I have to come to terms with the reality that at some point that won’t be me. And that some point, is just a couple of years away.

Being a special needs parent truly defines you. While I have my own identity and Parker has his own, we also have our identity which is a big part of who we are. While some people can’t wait for the moment when they let go of that part of them, I don’t know many special needs parents who do so easily. It brings a new level of trust in his caretakers, his roommates, and the people in the community that he will interact with. He will be walking through this world without his mom’s laser beam eyes providing a warning for anyone who starts to look at him with anything other than respect. No matter how much someone else loves him and cares for him, no one (except maybe his sibling) can give that look that reaches deep into someone’s soul as a warning as I can.

This next step will be important for him – and for me. As I’ve talked about many times, our magic age for Parker was always 25. At 25 we would be sure that he was living as independently as possible. I have that plan and we are working towards it. It will give us both time to see that he can happily and successfully live without me, which is important. One of the worst things that could happen to Parker would be to only know living with me and lose me. It is important for him to learn that he can be successful on his own and it’s important for me to see him succeed. I’ve heard the horror stories of special needs adults who only know life with their parents and then lose them – and in turn, their entire world, and the unbelievable stress, confusion, and regression that brings for them.

I focus so much on the plan and everything that I need in place, it is only when he makes me stop that I look at my sweet, innocent boy and wonder if I have done enough. I’m not asking for people to flood me with “You are such a good mom” comments, I know I am a good mom. I do the best that I can and that comes with success and failures. As we lay there and I watch him drift off to sleep over the sounds of Willow’s snores, my mind focuses more on the failures. Mostly the failures that were out of my control as I simply did not know at the time everything that I do now.

As those hot tears stream down my face, I quietly apologize to him for everything I didn’t know, for the challenges he faces, for the difficulty of his life and how very much I wish he had the opportunities of his friends to simply live without Fragile X. He deserved a life better than what Fragile X gave him.

Life kind of stinks in that way, so much of the knowledge that you need when your kids are younger, you don’t learn until they are older. In our world, they are always learning and discovering with Fragile X, new techniques for working through challenging behaviors are shared, and the accessibility to those who have walked this path before us are so much better thanks to technology.

It is part of the reason why sharing our story, our challenges, and our successes are so important to me.

I was talking recently with a mom who said she feels like she hasn’t done enough. I can’t help but wonder if all parents feel this way when their kids are young or if it is just for those of us in the disability community. This mom has worked so hard to be sure that her son has access to all of the therapies he needs, to the doctors that understand his disability, and educates teachers, family members, friends, and her community to better understand him. Her words and her path felt all too familiar. As we talked, I reflected on everything I have done over the past 22 years, fully aware of the progress that was made, and yet I still feel like I haven’t done enough. While I tried to reassure this mom that she has gone above and beyond, as she has, I couldn’t help but feel like I’ve failed my kids, too, and have not done enough. I thought of it as I laid there with Parker in the dark, watching him breathe as he slept so quietly. I could have done more.

No part of me will ever understand why life is this way, why some people are faced with such challenges and others are not. I also appreciate that his challenges are far less than many and I am so incredibly thankful to have him with me, especially as I have watched friends not be this fortunate from other disabilities, cancer, or life’s tragedies. I understand life could have been so much harder and try not to take for granted, even in these moments, the amazing gift I have been given with my children.

Like everyone else, I can only do my best. Sometimes that will be enough and sometimes it will fall short. In these moments of rest, when I let my mind slow down, I cannot help but wonder if I have done enough if my best was enough.

Eventually, I will drift off to sleep. We are yet to have a day when I haven’t fallen asleep during these given opportunities. When I wake up, every tab in my mind is open and going again reminding me there is not time to reflect on what I didn’t do but instead to focus on what still needs to be done and we keep pushing on while appreciating every moment we have together, even the incredibly challenging ones.

One way or another, we make life work. As much as I fear the loneliness I’ll have after we move onto this next phase, I wouldn’t change this plan for anything as it will truly give Parker the independence he needs and time to shine. And I know, he will shine.

And believe me, as hard as it is for me to slow down, and as hard as it is to worry that I haven't done enough, there is no way I'm passing up a chance to take a nap and cherish this time we have together. And... nap, I mean, really - never pass up a nap!

 

Saturday, July 24, 2021

Connecting, 30 years later.

 Last week I started my day with a message from one of my sisters linking me to my friend, Tom’s Facebook post where he had shared the news that a classmate of ours from Olympia had passed away. In complete shock, I scrolled through the pictures Tom had shared of Bob, just shaking my head in complete disbelief.

I only attended Olympia High School for a short time yet the majority of my high school years, my freshman year through the middle of my junior year. We moved to Hopedale after I finished 8th grade and then moved again during my junior year. I always wonder if anyone remembers me from my time there or if I was just a quick flash in and out of their lives that was forgotten.

I have so many memories, though, so, so many of them. I had a lot of great times while I was at Oly.

And some of those memories include Bob.

Bob was someone I saw every day as he sat by me in homeroom. We didn’t talk to me my freshman year, I was – without a doubt – extremely overwhelmed by Olympia which is like 8 times larger than where I grew up (and went back to for my senior year) in Cambridge. My sophomore year, I came back confident and ready to find my place at Oly – and totally out of my awkward stage. From that point on, Bob and I chatted briefly almost daily in homeroom. Bob was a flirt, our humor was pretty similar, and his smile added to his charm.


Bob Walt, Olympia class of '92

To hear he was gone, though, caught me off guard. I had not seen or thought about him in 30 years – and I’m sure he had not thought of me, either, but his death shook me and I’ve thought of it every day since.

Shortly after sharing about Bob’s passing, Tom shared that he was going to be back in the area and was hoping to see some friends. Everyone who knows me knows that last week was a huge one for me at work and I was working non-stop to ensure it went off as smoothly and as awesomely as possible. (And it was so, so, so extremely awesome!) on top of that, I had an order for 15 dozen cupcakes for a wedding. So, I had a lot going on.

I was exhausted. My house had not been cleaned in 2 weeks, and my yard is sadly neglected. And, I had the kids. I simply do not let people into Parker’s world – and trust me everyone wants to be in Parker’s world.  It is stressful for us both as expectations are always high and life with Parker is unpredictable. As well-intended as people are, even people in the Fragile X world, you simply cannot understand our day-to-day life – I know I share a lot and people feel like they do but, trust me, you and the last thing either of us needs is to be judged – or more anxiety.

But, Bob’s death just kept lingering over me. Life is so short and so unpredictable. Life is too short for me to worry about if my house is clean enough for anyone’s standards, if my yard isn’t as manicured as I’d like for it to be, or if my little family isn’t enough for anyone.

So, we invited Tom to stop by on his way back to Wisconsin. I had big plans for cleaning this morning and getting things pulled together but… Fragile X happens and our morning was it’s own special little shitshow. I was lucky to get a shower in before Tom arrived.

It was around the time that Tom arrived that Parker was losing his mind over wanting an inflatable in the living room (hello Halloween), my hair was still wet, the floors were not mopped, and I could write my name in the dust on the ledge in the entryway that is lined with my Isabel Bloom eggs that it hit me… *this* is our life.

Our lives are not picture perfect or always easy. We live each day in the moment, some of those moments are spectacular and others are soul-crushingly horrible but each of those moments makes us who we are. And, you can take that or leave it but you don’t get to judge it – and *that* frame of mind is something that I’ve always resisted until now.

I had given Tom a head’s up that flexibility is the key to survival in our house and he was go with the flow from hello. Parker insisted we take Tom to meet Scott, Jen, and Baylee – and they graciously let us stop by and we had a great time catching up while Willow and Baylee played. (Until Willow got hot and went back to the car to lay in front of the air vents - she is totally my baby!)

We showed Tom around the house, discussed the renovations we’ve made, and my disappointment in the state of my backyard as I’ve completely neglected it and it’s an overgrown mess. I’ve had so much going on this year, the yard has taken a complete back seat.

As we went to pick up pizza, Tom mentioned that he had worked in landscaping and had some of his stuff with him as he had done some work on his mom’s yard while he was down visiting and that he would be happy to help me by tackling the backyard for me.

And *this* is where you know just how exhausted I am – I said ok. Me, who has been doing everything on my own for 10 years, who never accepts help, said, “Ok”. Not only did I say “ok” but Parker and I took a short nap while he was working in the yard.

Not only did a lot get accomplished today (thanks, Tom!) but I got some rest and most importantly, I got to spend time catching up with a friend I haven’t seen in 30 years (and we got to be there when Tom got the news from his wife that his son had 2 awesome basketball games at the tournament he is playing in - in Las Vegas!) and, Parker was a rock star.

It was a good day.


Me and Tom, catching up after 30 years

It was a good day to remind me that most people do not expect perfection, that catching up is important, and that it’s ok to let people in our bubble sometimes. We talked about Bob, shared memories of high school, and caught up on everything in between before it was time for him to make the drive home.

It also reminded me to slow down and to take chances. Maybe it is time to let go of my fears and write that last part of the book I’ve been holding close to me and not sharing. Because life is short and unpredictable.

And most importantly – take the time to connect, whether it’s been 30 days or 30 years since you’ve seen someone, make time to connect because you never know what tomorrow may bring. 

Sunday, May 2, 2021

SOP ... the end of a school career.

 

At the end of March, an email notification popped up on my phone and read “Need to schedule SOP meeting” which – being the neurotic person I am immediately read as “Need to schedule SOS meeting” and was like… If this is an emergency why aren’t you calling me?!?

I clicked on the email and discovered SOP was correct. SOP is a “summary of performance” meeting to review, well I honestly do not know what we are reviewing – the past 19 years he’s been in the school district? I don’t know. What it means is that this will be his very last day of school – ever – and we need to wrap up the formalities in one last meeting.

In Illinois, like many states, individuals with disabilities in special education can remain in school through their 21st year of life. Parker’s 21st year ends on Monday. On Tuesday, he turns 22, and everything changes.

I’ve battled, man have I ever battled for these past 19 years. Part of me is done and so ready for there to never ever be another IEP meeting again. I’m tired of fighting. I’m tired of pushing for the district to do what is right for my son to have the appropriate education and accommodations that he requires. It’s exhausting, mentally and emotionally exhausting. Even the good meetings with the best teams when everything is going right, they just drain you.

And, they define you. Without you even realizing it, they define you.



I honestly thought I had done a decent job. Until I saw this “SOP” meeting request. Suddenly every single fear that I’ve had pushed back in the very far part of my mind came rushing forward.

“Have I done enough?”
“Have I asked for the right things for him?”
“Did I push hard enough?”
“Did I give in too much?”
“What if I would have…. “
“What if I wouldn’t have…”

Literally, everything you can imagine I thought, and I started to panic. He isn’t ready. I need the school. All I know is the school. It’s all we’ve done for the past 19 years.

I immediately pulled his previous IEP, well IRLP because we’ve been remote forever he’s had an “Individualized Remote Learning Plan” – so I went back to his last actual in person, pre-covid, IEP and reviewed everything we needed to put into place for his last year for this transition to be successful and none of it has happened. Not one single part of it. Because it couldn’t. It required him to be in person. It required him to be able to be in the community. Things we couldn’t do because they were not allowed.

He missed every single transition opportunity he needed and deserved.

I sent the reminder that he needed his exit evaluation. Because, I enjoy torturing myself or I’m secretly psychotic, I’m not sure which – maybe both – because that was pure hell to read.

Reading the email chain that I am sure I was not supposed to be looped into… I do not feel like anyone went in with the intention of Parker doing well or with any expectations of him. But he did. His parapro went with him and he did what was expected of him. Did he give more? Heck no. There were zero expectations of him so he gave them the bare minimum. Then, I got the report.

If there is a new goal for me, it really needs to be to change the way reports are written and presented to parents, because it is brutal and it hurts.

 I KNOW my son is intellectually delayed. I KNOW this. I don’t think about it 99% of the time because we are too busy living life but I’m aware of it. He’s 22. I tuck him into bed each night, I have to help wipe his bum, I do his cooking, our conversations are limited, and he yells at me way more than he should. He gets frustrated, he has meltdowns, he struggles with concepts. I’m totally aware of the fact that he is not at the same level as his 21 - 22-year-old peers. But, I don’t think about it.

I think about the fact that when he is running low on Gushers or Goldfish or pineapples, he pulls up the HyVee app on my phone and finds the food he wants, adds them to the cart, places the order, and schedules the pickup time. I think about the fact that he can do laundry better than most adults, and definitely more often. I think about his love for the Cubs, the love for the people he worked with, and the job he had. I think about his humor, his laugh, his strengths.

I know his weaknesses, I can’t focus only on them or I’d never get out of bed. Life is too hard for that. So when I get a report that scores him as “very low” or “extremely low” in every category, it is a sucker punch. It takes the wind from your sails.

I read that report multiple times. Every single time it crushed my soul. It sank my depression into a really rough place. How hard would it have been to include something positive in the report? How hard is it to think, “this is going to be really hard for parents to read, I’m going to include something nice.” Instead of just “let me be as brutally honest and as blunt and as harsh with reality as I can be?” Because, people, we know. We live this life. We know.

Instead of reading it and thinking, “We’re going to be ok” I read it and thought, “Holy shit, I have failed this kid in major ways.” Not the school. Not anyone else in his life. Me. I feel like I’ve failed him in every single way possible. This report was just so harsh, I’ve struggled to get past what I’ve read.

I’m getting there, I know that this compares him to other 21 – 22-year-olds. I know the differences there are. But, it’s hard.

And tomorrow will be harder.

Tomorrow I will drive him to school and drop him off there for the very last time. Tomorrow is the last, last day of school for him forever. And while he is there, we will have our SOP meeting and my expectations for it are not high. I think what bothers me the most is that there is nothing for me to say. There is nothing more to be done for this part of his life. Nothing.

And, honestly, without the last year and no preparations for Parker for what is next – he and I are both lost. There is no handbook in this special needs life. No one tells you how to make this work. I’m winging it. Just as I’ve been winging it for the past almost 22 years. I have a plan for Parker and in my head and on paper, it should work, but what if I’m wrong? What if he’s not ready? What if he’ll never be ready?

It’s a lot.

It’s a lot to let soak in. It’s a lot to process. It’s a lot to go through alone. It’s a lot to know others are going through it, too.

If you are, just remember, someone else is in your shoes, too. I am. I’m scared, too. I’m fighting the fear, the feelings of failure, the unknown of what’s ahead just like you.

And just like you, we’ll figure it out. We will. When we really stop and think about it we’ve made mistakes but we’ve never truly let our kids down and we won’t with this next part of our journey either. I’m not going to say it will be easy, nothing has been easy yet, but I will say we can do this.





Monday, September 14, 2020

For the love of pickles...

 I try not to ask for a lot in life.

I try to be a good person. I’ve failed at that more than once. I continue to try daily and refuse to repeat the mistakes already made.

I try to lift others up, to remind them of their worth, their talents, their purpose.

I try to be a good parent. I probably try the hardest at this. I also probably fail the most at this. I hear the most about this, there is no shortage of people quick to point out things they believe that I should have done.

I try not to let the words of others who criticize my parenting stay too long in my head. No one is a perfect parent… no one. We all make mistakes. We all have things we wish we would have done differently. We all have things we’ve learned along the way that we simply didn’t know years ago. This is all of us. I refuse to keep getting caught up in what could have been if I would have … X, Y, Z… because 1. I didn’t and 2. You were not here. You don’t know. Really, you don’t know. I mean, I’m amused that so many people *think* they know what it takes to raise my children without being here 24/7… or ever at all… but, there are times that amusement fades.

Right now, shaking the words and criticisms are harder. We’ve been quarantined much more strictly than most for 6 months now. I’ve been literally a single mom for almost all of these months. Not because their dad didn’t want to be with them but because the doctors said no, we cannot risk the health of our children. So, my house is the “safe house” the “germ-free” house. For many months they could only do outdoor visits with their dad, Jen, and the girls. No going indoors, no overnights. Just outside visits that we would drop everything for them to have. Parker refused to go outside, so those visits were primarily Allison. I cannot imagine how incredibly painful that was for their dad and Jen to be without overnight or inside visits for so long, but they are frontline workers, I can work from home. It was easy for me to close off my house. And we did, completely. And they showed up, almost daily, for outdoor visits. They took walks, bike rides, played with chalk, or simply sat and talked. They were here as much as they could be.

You likely are just now learning this. We made an agreement not to be public about the kids only being here with me. We had enough on our plates that we did not need judgment or to answer to others for what we were doing, although it was very black and white and simple. We were told our child would die. This is what we needed to do to keep our children safe. I don’t know if you’ve ever been told that something could kill your child or children but it pretty much scares the fuck out of you. At least it did me. If the doctor told me that shaving my head and wearing purple spandex every day would keep my kids alive, I would do it. We were, and still are, following the doctor's orders.

There have been no friends inside of our house – we got permission from the doctors for Allison to do a covid prom photoshoot with her friends (which was the best!). There were no sports, no school, no anything. Just me 24/7 until recently. That’s all they got… me. And I have tried hard, God do I ever try hard.

I tried to send cards to family and friends as often as we could. It kept Parker writing his name, it gave Allison a chance to stay more connected. We excelled at this prior to the puppy. I set up a computer to the living room tv so we could Skype with family and friends so we didn’t feel so alone and so that Parker could see that everyone had to stay home. Allison and I played card games each evening after Parker went to bed and when we could get him to join in, we’d play Uno with him – sometimes even on Skype with their dad and Jen.

Anything that comes into our house gets wiped down before the kids can touch it.  After a couple months of having groceries delivered by family and friends we started doing curbside pick up – it got us out of the house. We didn’t do drive-thru or food delivery for the first couple of months – there was just too much we did not know. We do now, partially because I was not made to figure out 3 meals a day, every day, all by myself. I’m not that mom. If it can’t be delivered or picked up curbside, we have family and friends who are always ready to pick something up for us. They’ve been our lifesavers.

I’ve put keeping the children safe as my main priority.
I’ve put keeping the kids connected to others as a priority.
I’ve put our survival as a priority.

I have been so focused on taking care of everyone, on keeping others connected as a priority, and surviving that I’ve completely neglected my mental health. The last thing I wanted was for anyone to know that I was struggling, that my depression and anxiety were the worst they’ve ever been. I smiled, I laughed, I faked it the best I could through every single day… and still do.

I made sacrifices that I am criticized for almost daily.

Parker is incredibly routine-oriented. He lives off of his calendar. He likes it when there are things on it, he likes to be busy. We update his calendar almost daily, it is what kept him grounded and happy. And suddenly it was gone, wiped completely clean. Not only did we take off all of his Special Olympic practices, the state games, and all of Allison’s activities but we wiped off all of his visits with his dad.

Just stop for a minute and think about how much the change impacted you.

Now imagine being a routine-oriented kid who’s calendar is his grounding point and it’s gone. All of it. The routine is completely gone. On top of that, no more fast food. No more running to the store. No more having friends over. Everything is gone. And suddenly.

That threw my boy into a tailspin. The calendar gave him a feeling of control. He knew what to expect every single day. And that was gone. He needed something to feel in control so my cellphone became that substitute.

It meant that text messages would get deleted. Facebook messages would get deleted. Phone calls would not be answered. And I would never know about either.

And, I could not leave his sight. Where he would be is where I would be. I could not work, I could not take classes. I could simply be where he was and our world was calm. If I opened my computer, our world was back in tailspin.

This is what has kept his anxiety down. Keeping anxiety down is key in this house. It prevents meltdowns and we were not in a situation to have a meltdown.

I knew how much his dad wanted to see him in person but it meant getting Parker outside. So, against everything I wanted I did what had to be done to get Parker outside. I offered up turning on an inflatable. And just like that, he was outside. He was able to visit with his dad, Jen, the girls, Rylee and Michale.

Of course, one inflatable in the garage turned into one inflatable on the deck to get him out into the back yard and not just the garage. One inflatable turned into four and for several months now there have been 4 huge Christmas inflatables inflated on my back deck every single day… all day.  And, honestly, I did not give a shit. It was the least of my worries.

In late June we were given the option of choosing 2 houses that we felt were safe that we could trust the people in to follow guidelines and keep their house as safe as possible for the kids so we could do indoor visits. We choose their dad’s house and my parent’s house.  Indoor visits were not overnight visits though.

Those came in late July and with a condition… I still had to keep my house as a safe house. While the kids were now able to stay the night at their dad’s once every 10 days, we still were not allowed in stores, and I still need to restrict my visits to outdoors with the exception of my parent’s house.

Late July also brought Parker’s first quarantine meltdown. And honestly, his first meltdown like this in a few years. Years. Read that again… YEARS. And it was bad. I don’t often talk about Parker’s aggression, we’ve come so far with it that it rarely is an issue but when it is an issue, it is seriously an issue.

And then, in mid-August, as secretly as we had changed the kid’s visitation without being public, we brought my Grandma home to my mom’s house for hospice.

While I agree with both decisions to be private, they took a toll on my mental health. And seriously, God bless Melissa and Sonja because they’ve heard every frustration and virtually wiped every tear that I’ve shed these last 6 months and talked me off the ledge more than once. There were times I became so withdrawn I didn’t even talk with them.

Keeping everything private wasn’t hard for me but it was hard on me.

I’ve been slipping more and more each day, especially since losing my grandma. Losing her crushed my soul and still doesn’t feel real.

While I’ve been slipping, the words from others – especially ones they tell others thinking they won’t be repeated to me (insert eye roll here) compounded with the ones being said directly to me I’m having trouble shaking. They leave me doubting my parenting and leaving me incredibly angry. Because, honestly, no one was in my shoes but me. No one. No one else was in a position to remove the kids from the world and be here as their only person to help them through it. Through something no one has ever lived through before. Something we still are trying to understand. No one has been in these shoes. So being critical of me for Parker having my phone or for me having inflatables up (we have one up in the living room now, too) is really out of place. Yet, it is taking up space in my head. My depression and anxiety are bad, like really bad.

And that brings us to the pickles.

We made our almost daily trip to Dairy Queen for some chicken strips for Parker. the other day. We did the order we do almost every day. 6 piece chicken strip basket without the dipping sauce, no drink, and a side order of pickles. We ordered Allison the same. They repeated the order back and we got our order and went home to eat.

Then it happened.

I opened the boxes of chicken strips and there was gravy, thankfully still in its container and not spilled. This is a crisis in itself because we said no gravy but it wasn’t catastrophic. What was world ending was there were not any pickles.

Yes, I should have checked before we drove off but we’ve been doing this for months and it’s been right every single time. I didn’t see anyone new when we were at the window. I had no reason to think this day would be different. But it was. There was not a single pickle to be found.

At first he laughed it off… “hahaha, the old guy ate all the pickles” (the old guy is always the reason for something not to go right and it works, I don’t know who the old guy is but I appreciate him.) but clearly that was not how he really felt as we would quickly learn.

I grabbed the hamburger pickles from the fridge and a small cup and quickly poured some pickles into the cup (I hate pickles, I don’t touch them – they freak me out). He hated this. He didn’t want these pickles.

I was pissed. And exhausted. And done.

And angry. Super fucking angry. I don’t ask a lot but I DO ask that you get our order right because when you mess up the order of a kid with fragile x or autism, you’ve really ruined our day. Everyone’s day.

This was my tipping point.

This is when I quietly said out loud after he walked away angry at ME for their mistake that I hated my life. That I hated Fragile X. That I could not keep doing this. 

I don't hate my life. I hate where we are in life right now and the worry of not knowing what I will do next. I hate the uncertainty and the unknown of this virus. But my life, I do love. I don't hate Fragile X, I do wish we could live without it or at least more easily with it. And even when I feel like I can't keep doing this, I know I can and I will.

I was done. Seriously, done. I could not do this anymore and that scared me.

I lost my happy tone and asked him what he wanted me to do. He didn’t have an answer but I could see his frustration growing and knew that I was pushing him way too much. He was already thrown out of sync, I couldn’t push this anymore. So I grabbed my keys and wallet and said, “FINE. I will go back to Dairy Queen and get your pickles.”

But he didn’t want that either.

I was fighting back tears now.

I was out of solutions. I was out of energy. I was out of life. And I knew I could not handle another massive meltdown.

He picked up his plate and put it in the microwave. He was done. He simply wasn’t going to eat. He also wasn’t going to let me go back. He would simply be hungry and there was absolutely nothing I could do to make him eat.

And it crushed me.

I’m tired of being completely defeated.

I need your help. I need you to understand a couple of things. I need you to understand that you do not know what others are going through. Some of the “happiest” people I know are fighting depression or anxiety as their biggest demon and not always on the winning side. I need you to understand that our special kids are struggling and their parents are doing everything they can to keep some balance in their lives. I need you to take this pandemic seriously, wear your masks and social distance. I want my life back. And no, it won’t magically happen after the election, it’s a global pandemic. This isn’t just a US issue, it’s a WORLD issue. So please, please do the right thing and wear your masks, stay home when you can, social distance when you are out, and wash and sanitize your hands frequently. I need you to be a part of the solution of getting our lives back. Our kids need it. We need it. Our mental health needs it.

And most of all, I need you to understand our kids, even our adult kids with special needs and do your part to help them through these trying times. They are isolated, too. And when the one thing we have in our routine is getting chicken strips, please, please, please be sure the order is right and don’t forget the pickles.