Why Don’t You Take A Few Days To Get Away By Yourself?
This rhetorical question always trips me up. I appreciate the sentiment and know people who make this comment are just trying to help. I always wonder if those who ask me that question live in a non special-needs world and if this is something I truly need to address to begin to cultivate an understanding for those who live in a much simpler world than I do?
I Know It’s Not Just Me
First of all, I have the most present, supportive, loving, and helpful family as anyone could have. Still, it’s extremely hard for even me to find time and resources to ‘just get away’ for a few days. This past year, I’ve had 2 nights off. Yes, two, and not consecutively.
Many families don’t have family and resources. They can’t ‘just’ get away for a break. It will never be that simple.
Can Jessica’s Dad Help?
Yes. He can, he has, and he will. During the pandemic, dad had to continue to work and go to the office every day. That meant constant exposure potential. We made the choice to not continue Jessica’s visits at his house during that time. Also during that time, he has been mostly working 7 days a week.
Things are beginning to settle down for him, and he and Jess have both now had their vaccines. We hope to start back Jessica’s regular visits to his house soon.
Can Nonnie & Granddad Help?
Yes. They can, they have, and they will. During the pandemic, we made the decision to discontinue visits to their house to help protect Nonnie & Granddad, who happens to be in an extremely high risk category.
Now that they and Jess have had their vaccines, we hope to start back Jessica’s regular visits soon. But for now, Nonnie is recovering from a partial knee replacement and it’s not the right time for Jess to start back with her independent visits there yet.
Can Hannah Help?
Yes. She does and will continue to do so. Hannah is a huge help. However, Hannah works full-time during the week, and often needs the weekends to recover due to some lingering issues from a major illness 10 years ago.
What About Marlow, Jessica’s Caregiver?
Marlow helps with Jess during the week. It is her job, and it’s not an easy one. It’s quite mentally taxing, and pushing them together for extra time is a risk of over-exposure, and not a risk I am willing to take.
Getting Away Is Not Just About Finding Resources
It’s difficult to let go even when resources are available. When Jess was younger, if I left her at home with her dad to go to the grocery store, to run errands, to go to dinner, etc., Jess was hysterical and convinced that I would never return. It’s traumatic, not just for her, but also for dad and anyone else that’s around, as well as for me.
After Jess was able to have her own phone, she could, and did, call and check on me. Constantly. Like 10, 15, or 20 calls/conversations in a row. This means whatever outing I’m on is not really much of a getaway.
Who is ‘Qualified’ to Help?
This answer is directed to those who live in the non special-needs world. Please accept that it’s nearly impossible to understand the full picture. Again, it’s not a criticism. There is no way to understand the full picture without living it day in and day out. With Jess, for example, since she is seen in videos all the time, one might think her needs are easily understood and that keeping her for me is not a big deal. I promise that for all of the little intricacies you think you know, there are 100 you don’t.
Do you know why? Communication. Jess has a communication disorder. I speak her language but few do. What I’m saying is. I make it look easier than it actually is.
What I’m saying is, I make it look easier than it actually is.
When Jess is struggling or anxious about something and can’t communicate with someone who understands what’s going on, it’s meltdown city. There are few people who I want to subject to that.
What’s My Point?
This post is part of my ongoing effort to help develop a deeper understanding of the world families like ours live in. My point here is to explain why it is challenging for most special needs families to arrange extra help to ‘just get away’ for a few days.
I have a special need kid. He is 6 and after separation from his dad our relationship became even closer, as i am also alone without my family here. I know that i am the person who knows him and makes him the most comfortable but during pandemic ( i got COVID – quite heavily) when it was just me and him at home and it made me realize few things:
– it might happen that i might disappear suddenly from his life for short or long time
– my constant presence and worrying about everything was preventing him to be uncomfortable and eventually to try, fail, even though through some crisis
– unfortunately bad events happens and don’t ask you if the schedule allows it
It has been quite traumatic event but i am try to control my ( yes MY) anxiety and let him more exposed to time without me. Tough for him and for me but we have to learn and keep learning new coping mechanisms as i realized that by avoiding him stress i was in the long run invalidating him even more that he is actually is.
No criticism on anyone from my side, just want to share my story as i know how hard it can be expecially as single mom without help from family or kid’s dad.
P.s. i love your content. It is really giving all of us some hope about our kids future as adults.
Val… I understand. While everyone who cares for a loved one is unique they are also alike as well. The feelings of am I doing enough? Could I be doing better? The stress that comes along with being a caregiver. The time spent being a caregiver. The single most rewarding thing for me is when they smile at you. That’s when you know you’re doing OK.
Thank you for sharing your beautiful family with us. You all are so very loved!!!
While I don’t live in a special needs family (I have special needs relatives), I get it! My mom wasn’t special needs, but required caregiving. Because she lived with me, I was her caregiver by default. I basically had no life for a number of years. I’m not complaining because I’d do it all over again if my mom was here, but it wears you down. While I trained other family members to care for her, her meds, insulin injections, etc, my mom always preferred me. When I’d arrange to go away, she wasn’t happy…she’d say, “You’re going away again?” And all the preparations in planning to go away sometimes was just not worth it. I tried to take a day off once a week. At first, I just stayed in my room and rested but mom would send the caregiver back to ask me this or that. Later, I just started leaving the house…only for her to call and wonder when I was coming home ? My mom was easy to care for but it weighed on me emotionally and physically, since my doctors told me I could no longer care for her. When she was approved for a professional caregiver, it was extremely stressful having a stranger in your personal space and training them in caring for my mom. I had to let go 4 out of the 6 caregivers (one being family ?) she had. I say all this to say, while my situation was not special needs, as hard as it was, I CANNOT IMAGINE what you deal with. Keep doing what you’re doing because I think you’re pretty amazing!
Ditto Stephanie ?
And getting away physically does not mean getting away mentally. There is always that constant. You do good in your hard. ❤️
Ditto Stephanie ?