It feels like a whole lotta nothing, but clearly something has been going on here these days.
It’s been a whole lotta let’s try to get you to take this medicine before we take this medicine. And a whole lotta I know it’s 1AM and you still can’t sleep. And a whole lotta what shall we fix you to eat that is low salt/low sugar, but also not crunchy, or mushy, or with any smell, or not the right temperature, or I am not even sure what the problem is with this because you have been eating it almost every day since you were four and now it’s dead to you.
I told my friend that it feels exactly like having a newborn. I spend my days doing things that I know are important, but I can’t quite tell you what they are in the haze of sleeplessness and tending to basic, human needs.
Adding more medicines to the mix, along with a different diet and the ever-loving time change means we are in a kind of survival mode right now. As we navigate this new diagnosis and all the fun that comes along with it (she says with a sigh and a tired smile), we are also learning how to function in the midst of ever-changing needs.
For my son, it’s a lot like Alex described in his post, . He helps us understand what it can be like to process change on the spectrum and compares it to moving a train. “To move the train to another set of tracks requires me to lift the whole train by thought power alone and carry it across to the appropriate set of tracks. I then need to ever so gently lower it down, making sure that all the wheels are perfectly aligned and that none of the couplings have come undone.” This example has stuck with me because it seems to perfectly depict the difficulties my son face with changes in our daily routine.
It’s exhausting. It requires all of his effort and focus. Sometimes he can pull it off and sometimes he can’t. Sometimes, no matter what we may say, or threaten, or promise, he just doesn’t have it in him to move that train again.
So, it has been very difficult for him. And, subsequently, a challenge for our family as well.
The good news? I am learning. We have had enough of these survival modes in our family life over the course of the last several years. We are figuring them out, and getting through them faster and without as much damage.
Special Needs Motherhood: How To Survive Survival Mode
1. Sleep – Whenever we can for as long as we can.
This goes for all of us. I have been getting up later. And purposing to not feel bad about it. For example, a few nights this past week, I did not get to bed until around 1:30 AM after my oldest was able to finally relax his brain and get some rest. This was, of course, after telling me all about how important it is to dose your aquarium at regular intervals, and about a thousand other things that I didn’t quite catch (it was after midnight and there were just so.many.words). All of that to say, 7:00 AM came way too soon. And how did 7:00 AM announce it’s arrival? With him calling me back into his room to talk some more about coral reefs and fish supplies.
His brother hasn’t been sleeping well in the midst of the chaos either. I have been letting him stay asleep as long as he likes. Some mornings, this has meant he is still in bed at 9:00 AM. Usually, this stresses my momma brain out. “We have to do school! We have to be productive members of society!” I think and start to panic. These days, I have been trying to push aside those thoughts and the mounting freak-out, and instead accept that my little guy is trying to cope as much as the rest of us. In survival mode, I just let the boy sleep.
2. Divide and Conquer – Husband to the rescue.
I am desperate for my poor husband to walk in that door at the end of the day. It’s not that I need him to necessarily do all the things with my son – I just need back-up. And someone to be sweet to me. And someone to say, “Let’s order pizza tonight since you totally forgot to defrost the chicken for dinner.”
Even more so, Mick has been staying up late (until midnight or so) with my son. He is his caregiver exclusively between 9:30 PM and 12:00 AM. This allows me to get little brother down, breathe a little, and get in a little cat nap, in case I am awake for a good part of the night. Although we can’t sustain this long-term (the man does have a job to get to in the morning), for now, it is the welcome break and little bit of rest that I need to make it through the next day.
3. One on One Time – Because his sibling lives here too.
It is never easy for my youngest to be the sibling in survival mode. In an effort to help him cope and live well during this season, I have been spending more one on one time with him, as much as possible. We have been lying around for a while in the morning, reading books and chatting together. I have been intentional about joining him on the trampoline or playing soccer everyday, since movement and sports seem to be his love language. Not big stuff, but little snippets of one on one time with momma help offset the amount of time I am spending with my oldest, and help him navigate the day.
This may seem obvious, but to my shame, this is the first time I have been intentional about this. In the past, I unfortunately just gave my sweet boy whatever I had leftover after all the other needs were met. (We do the best we can with what we know at the time, I guess.) This shift has made a huge difference in his overall happiness and ability to cope in this ‘survival mode season’.
4. Letting Things Go – So not cleaning right now.
I was crying with my girlfriends a few weeks ago when this all started. They cried with me, but also helped me see how much I could really ignore for a while. The truth is, no one else can really help my son navigate this season. I am the only gal for the job. There are however, plenty of other people who could clean my house or fold my laundry. Although we don’t have outside help for housework at this point, it did help me to define my priorities and stop stressing out about the floor being a little sticky, and all the laundry piling up.
The truth is, I will get to these things around the house. Of course I will. And if for some reason, I just fall too far behind, we might consider paying someone to help. At the end of the day, it really, really doesn’t matter – except that it feels like it really, really does in my own I am a stay at home mom hello this is my job and I am failing head.
When I start to worry, or feel like I am failing when I can practice spelling words by writing in the living room dust layer, I remember what my friends said. I am the only one who can care for my family right now. If worse comes to worse, we will ask for help, or pay for it if necessary, for the other, not nearly as important tasks.
5. Perspective – I am not alone, and neither are you.
Every single day, I am taking the time to drink a cup of coffee, do the no more than 5 minute If:Equip Bible study (don’t get me started on how much I love these girls), pray for as long as I need to get all the feelings that well up in my head and heart out, and then move on.
I am re-reading my all-time favorite mom figuring out how to best help her son book. It encourages me beyond any other, and makes me feel like if she can do it, so can I.
I am also purposing to check in online with other autism moms. They get me. I get them. They share stories of their day and sometimes I can relate. Sometimes I think to myself, “Whoa. That is really tough. I have it easy compared to them.”
Perspective – it does a momma good.
This is working. We are in survival mode to be sure, but we are not drowning in it. Our life may look a little funny because of these intentional shifts, but I can tell you, we are surviving. We are starting to calm down. Some days, we are even thriving.
We just might be figuring this out.