Ok, so Jordan has been a real pill the last two days. But you know something? He had two full weeks of amazing. I hadn’t remembered about how amazing he could be. God blessed me with a window into my little boy so that I could, no, I have fallen in love with him. Oh, he has been all over the place and feeling all different ways, but he was my Jordan and I actually found myself finding him to give him smooches now and then. I love my little boy!
Something is different today, though and now I realize that it really was hard (and not just in my head) going on 3+ months of these behaviors with no break. (He had strep throat off and on for 3 months and was never 100% during that time.) It is disheartening to watch him struggle and not be able to fix it for him. But… the last two weeks I had a window of the real, underneath-the-diagnoses Jordan! And that Jordan is still under there and I will get to see him again! I just need to be stable and safe and structured and nurturing until then.
The behaviors that are back (for those of you in similar boats and those of you who just want to understand) are things like: throwing every blessed toy, be it big or small, but especially hard and noisy ones. Laughing hysterically and inappropriately and generally being unreachable and unreasonable. Stimming a lot (tongue sucking especially) and stimming more intensely and compulsively. Running around the house and getting into trouble instead of interacting with siblings or playing more appropriately (usually, grabbing and throwing all items). Just seeming more disorganized in his thought patterns. Some of this is pretty subtle, but it’s very obvious to his Mommy and is sometimes very, very obvious. 🙂
Why the change? Good question! We are playing the guessing game. Attachment disorder processing? Physical discomfort from something? He learned something new that’s got his brain in hyperdrive? Something about autism or sensory processing that I don’t understand? Something we did or somewhere we went that caused him anxiety that he’s expressing after the fact? He noticed his hair is on his ears and knows I’m going to cut his hair soon? (just joking with that one) Boredom from an extended summer vacation?
Anyway, I loved that I got to re-fall-in-love with Jordan and enjoy him so thoroughly for a few weeks. And I’m praying it stays at the forefront of my mind and that I remember patience as I navigate the moment-to-moment situations. Like laughing and falling down instead of holding my hand and walking with me. What do I do with that? Anger, stay at bay! Patience, take control. Pray, pray, pray.
Rachel,
I really enjoy this blog about your son, Jordan. I had an autistic friend when I was in High School and he was always full of energy! I understand there can be hard times that are draining. Keep up the good work, know there are people here in Boston cheering you on!
I know this is not **the** problem, but as I was talking to several other moms and we **all** have crazy kids right now, one mom observed that it is coming up on a full moon. Nutty as it sounds, that does affect the small folk (and the big folk) sometimes. Just a thought.
I hope this “spell” is soon over and Jordan is your dear little boy again.
We all love him but do not really know him. Thinking often of you and your dear family.
I’m so glad you had those two great weeks with the real Jordan. May you have many more and lots of patience in the in between times! I totally get the guessing game with behaviour… there always seems just way too many variables to figure out a cause. Just to throw one more variable out there – could it be a food intolerance thing? There have been times when Niko was just so wound up – more intense stimming, giggling, hyperactive, and really just “not there.” The only connection I could make between those times was sesame seeds. He had had a lot of rice crackers with sesame seeds both times before the crazy episodes. So we’ve taken him off of sesame (he was eating a lot of tahini before to up his calcium since dairy doesn’t agree with him), and so far so good but I’ve been scared to test my theory. Still who knows… perhaps it was the moon or anxiety or boredom or the hair over his ears. 🙂 By the way, how is the gluten free diet going? Are you still on that as a family? We had Niko gluten free for about 6 months, but we didn’t notice a difference so he’s back on it again. It sure makes it easier to just avoid dairy and not worry about the gluten.