It’s hard to comprehend that Little E is four weeks old today!?!? Time flies! Perhaps it particularly flies when you’re too tired to understand the concept of time anymore. 
We do seem to be getting some aspects of the baby’s sleep to a better place, so we are starting to get a bit more sleep at night, and sometimes even in our own bed too. The nursing/recliner sleeping thing has certainly been rough on Mary. I think we’d both forgotten how much the sleep depravation babies bring with them can turn even the best of us into drooling, narcoleptic idiots.
The J-Man is struggling more than before in his adjustment to everything. Weekdays when he’s at school much of the day, he does fairly well overall. We haven’t seen any major, ongoing issues at school, which we think has been a real achievement for him. He certainly has been ‘off’, with his teacher and OT noticing what we have been at home – he’s hard to calm down and get to focus and generally keep still in one place for any length of time. It’s clear the lack of structure in our chaotic house right now is really causing him some stress.
A couple of hours after he gets home from school, he gets more and more into his “running rebel yell” mode, where he runs aimlessly around the downstairs hollering. He’s not upset or angry or anything – as a matter of fact, he’s generally smiling and even laughing while he’s doing it – but it’s like he’s turned into pure, nearly uncontrollable, kinetic energy. Eventually he can get so overloaded that he starts coming unraveled. This has been really bad over the weekends where he doesn’t get the structure of school and losing him to his frenetic running and hollering is almost a given.
We’re been doing some serious therapeutic brushing and joint compressions lately [a real basic overview here - just don't go doing it on your own without a trained OT], which do help, but when he’s heading toward full freak-out, the calming effects of them last little more than a few minutes. Even staying ahead of the freak-out, the brushing and compressions only seem to partially forestall the inevitable. Right now, we can’t really have much structure around the house, so it’s clear we need some more serious sensory intervention.
The OT at school is starting him on an experiment with a weighted vest. [a decent overview here] We tried this about a year ago. He was kinda young for it then, and even the little bit of extra weight threw his then more fragile gross motor skills and balance off so much that he couldn’t even walk in a straight line. Reports from Day 1 of this latest experiment with it was mixed and inconclusive, but it takes a few days to discern much about whether it’s helping or not.
On the personal side of things, to be honest, I’ve been having a very rough time of things the last several days. Prolonged lack of decent sleep is usually a one-way ticket to a bad place for me regardless of anything else. Most days, I’m a walking, finely-tuned chemistry set. With our daily – particularly nighttime – schedules being what they are right now and all the new and exciting and stressful and sometimes confusing changes in our lives, I haven’t found a way to rebalance that equation.
Physically, my body is feeling a lot older the past couple of weeks, too, to the point where it’s often hard to bend over to do much and even walking anything more than a couple of lengths of the house feels like running a couple of miles. I’ve seen more of my chiropractor than usual, and I’m going for more therapeutic work tomorrow to see whether she can get my back and knee to move. Even simple things like bending over to change a diaper or walking the baby around are getting harder.
Trying to coax a non-sleeping baby through the night and a stressed, unfocused, whirling dervish of an autistic toddler – along with his crying brother – through the day has some weekends felt like a bridge too far for me. I think it’s the need to divide time between them that’s been the hardest for me. I haven’t reached any sort of peace with that yet. I know it’ll come someday. Right now, it’s just hard.
I had forgotten how tiring and emotionally and physically challenging these first weeks with a new baby can be, even without all the other stuff in our lives. I just hope we soon get to the point where we get just enough sleep to restore just enough brain cells to really enjoy and appreciate how good things really are. It’s hard to keep perspective when your main objective is simply to make sure everyone is wearing the correct clothes and you don’t drool on yourself in public… at least not much.
Posts that hopefully are similar:
- What’s Your Autistic Toddler Like Now? (Part 3)
- Stimming in a Winter Wonderland
- Trying to Get Perspective
- Be Our Vest, Be Our Vest! We Love Our Weighted Vests!
- Where Am I?
- Time flies when you’re too tired to tell time
- Worry
{ 2 comments… read them below or add one }
Hi. I am a longtime ‘lurker’ on your blog, and I wish I could express how much support I have felt from your musings. I am sending you both tons of support and good vibes in this very demanding time of having a newborn. I found your blog when I was overwhelmed with my own newborn who also had various tummy issues and who knows what else. One day I may have the time to tell you the whole story, he is now 11 months old and doing much better. I have found different supports in my home city much of it related to various information I garnered from your blog. I did a ton of research when he was little, and one of the first places I found as a starting point was your blog. Even though we were not having exactly the same experience, it was your family’s attitude and perspective and ongoing love in the face of challenges that really helped inspire me through difficult times. Your blog also led me to many other links and related materials that greatly helped me out. So it is at this challenging time with your newborn that I am sending you prayers and love and support. I want you to know that like your blog, which helped me feel not so alone, you are not alone in this sometimes difficult journey. (I know you know this, but I wanted to say it from my heart anyway.) My little guy cried an enormous amount and hardly ever slept, and it can really make a mother feel helpless, so I empathize hugely with Mary and her ‘recliner nursing’. Just know that many people are wishing you well in their prayers as I know for sure that so many people that have felt supported trough your writings are now holding you in their thoughts. I am envisioning lots of good sleep in your future! Tons of love to Little E, J-man and your whole family.
Dominique,
Thank you SO much for your comment! Sorry we’ve taken forever to respond, but that’s apparently how we’re going to do things for a while.
Your comment could not have come to us on a better day. Much of last week and this weekend were really rough around here – the kind of rough where you just pray for the strength to scrape yourself off the floor and keep moving. It’s no one thing that’s done it, but a combination of various things that seem to have knocked me to the mat lately. The word you used – helpless – really captures it.
It’s the kindness of people like you who help us keep our heads up and carry some of the burden for us when we need it. We hope we are able to do likewise for others.
I know things will improve – they always seem to – but in the chaos around here lately, perspective is limited to about 30 seconds either side of where we are at any given moment. When I lose that broader perspective, things get very hard for me to deal with. Thanks for helping us see beyond that.
Today was quite a good day, one of those signs you look for that the clouds are starting to break. We’re thankful for people like you who help us pull our heads out of the ground so we can look and see the little victories when they happen.
We’d love to hear more of your story if you do get time to tell it someday. Again, thanks. Your words meant a lot to us.