Disclaimer: There was a time during the first year after KBear was diagnosed that I didn’t want to hear about how things would get better. I didn’t want to hear that we’d find our way and she’ll mature and just hang in there. I wanted, and needed, for my pain and grief and exhaustion and fear to be seen and heard and recognized. I wanted to hear people say, “Yes. This really sucks. It is the hardest thing you will have to face. It makes sense that most days you don’t even know how you are physically or mentally or emotionally putting one foot in front of the other.” If you are in this place, know that I get it. I see you. I feel you. It sucks. End of story. And if you are in this place, put a bookmark on the post and stop reading it. It’s fine to stay in the muck for now. Know you’re not alone, and know that this post is here for you when/if you get to the place that you will be ready to read it.
For the rest of you who are just starting off on the higher needs path . . . it gets easier. I still feel as though I’m just starting out, but really we’ve been at this SPD, autism, 2E thing for over 2 years. I am close enough to those early months that I can vividly remember the heartache, the frustration, the anger, the doubt, the uncertainty, the stuck feeling. But, I am also far enough down the road to know that it does, indeed, get easier.
Note that I say it gets easier. I do not say it gets easy. Maybe someday it will, but for now, I know that there are still days when I am so physically drained that I can’t think straight. I know that there are still days when I am crying in the closet and lack all confidence that I can do this. There are still days when it takes all of me and then-some to make it through. But, I also know that these days are not every day.
In the early months and years I didn’t really have any tricks to fall back on. I didn’t know what works for KBear. I didn’t even know what senses were fully affected or what senses we all actually have (I mean seriously, the only reason you might know that we have more than the 5 external senses is if you’ve had a sensory diagnosis in your family!). And so I felt more helpless. I felt like I was floundering in the wind and KBear was floundering right next to me. And because I couldn’t help her regulate and she couldn’t help herself regulate, most of the time she was dysregulated. Which meant most of the time she was melting down. Which meant most of the time I was feeling more than empty and cried every day.
Now, I have tricks and tools. KBear has tricks and tools. We know what often works for her. She is not melting down continuously. I am not crying every day. And because of this I have the experience to tell me that the bad days won’t actually last forever. I know that good days are possible, even if they’re few and far between. That wasn’t an assurance I had back in the early days.
And, yes, of course, the bad days continue to happen, but I’m not nearly as depleted, so I only have bad days once or twice a week or maybe even every other week. And yes, there are months that can be bad and difficult still. Last spring was a nightmare and it felt as though we were right back at the beginning. And I intentionally don’t think about puberty and how it continues to inch closer because I can only imagine what kind of craziness that time will bring.
But, hang in there. It gets easier. You will learn your child and what your child needs. You will gather your own tricks and tools. You will learn the cues that indicate when one type of intervention will be more likely to succeed than another. You will find support. You will find time for yourself. You will make it through. And I know that it might be REALLY hard to accept or believe this right now, but it will get easier. And until you can believe that for yourself, we’ll be here. Holding the hope out for you however we can.