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. 

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