It was autism awareness month and since my son’s diagnosis I feel like I have spent a lot of time on that and less on SPD and my daughter’s special needs. I want to change that starting now, so this post is all about Darling and her sensational needs.
Most of us here would agree that one of the main issues we have is with others not understanding. People, even family and friends, thinking things like “SPD is not real. Your kid is just having tantrum. She is a brat. Spoiled. Needs more discipline.” I am fortunate in that I do not have family that says this to me….yet. But with certain family members I can always feeling it brewing under the surface. I see the glances they share. I can tell they think she is just an emotional, sassy girl acting out. And it breaks my heart for her.
We had a 90th birthday celebration for my grandma recently. Darling’s threshold was already low for what she could tolerate, then we threw her off her routine (VERY un-regulating for SPD kids) and triggered her anxiety with all the people. It was more than she could cope with, so little things set her off and she had a hard time. It was not a full blown meltdown, but she cried and got very upset repeatedly and we were “that family” this day.
She was doing some her signs where I know it is SPD related (fist clenching, finger itching) and thus difficult for her to have control over. In truth, I am really proud of her. At home, that would have been a full out meltdown. Years past, she would not even of had the ability to control, it as much as she did yesterday. It was really hard for her to not let it escalate. When we went into the kitchen, Dad told her to get it together, and she said “I can’t get it together. I just can’t. I want to, but I can’t. I am trying. ” She is starting to recognize and be able to articulate when she is at those points. It is heart breaking, though, for me as her mother. She feels embarrassed afterwards. She worries no one likes her anymore because of acting like that. Self-consciousness and low esteem, especially the closer they get to adolescence, is big in SPD kids.
I was actually really proud of her for being able to manage it as well as she did at the time. Now, she can usually keep it together in public, but if it was a rough day with triggers and it took all her energy and to keep it together, she will meltdown once she hits the door. She has already come a LONG way. She used to have meltdowns, huge ones, EVERY day, sometimes multiple times day. She has them only every so often now, and usually there are trigger events so they are more predictable. She used to have them for little things, like her blanket facing the wrong way (she is still VERY particular and that is normal in SPD as they often feel so out of control of their own body and mind, that controlling other things makes them feel better and more stable). Now it takes a lot more to ever get to that point. Part of why she is so much better is because she is getting older and learning how to cope better with things, and her threshold of tolerance thus grows. She has also learned a lot about SPD and what helps her and what does not help her. It is wonderful to hear her articulate that she needs some prop (proprioceptive input) because she is feeling out of sorts. She could not identify that 2 years ago. We did not know it either. We were thinking of having her evaluated for psychiatric/emotional issues at the time because we knew something was wrong, but couldn’t figure it out. It has only been progress since we learned about SPD.
Of course there a multitude of sensory issues like over sensitivity to sound, touch, smell, texture (sound is her biggest thing, but some others). Motor planning issues (coordination, difficulty with complex activities like riding a bike), rigidity, poor regulation (one of her biggest struggles) and lots of other stuff, too. If I gave her a task with 2 steps instead of one, smart as she is, she can get completely confused and overwhelmed and I have to break it down. Her brain is wired differently. She expends a lot of energy trying to sort info and filter out what is not important and figure out how to appropriately respond, something the rest of us do naturally and take for granted. This gives her a lower frustration threshold and makes her prone to moodiness and more. Enter meltdowns. I am focusing on this a little right now because this is the one people have the hardest time understanding and most often they think it is a choice, a behavior issue, not a sensory issue.
This is what broke my heart that day. My girl is sweet and smart and tries hard. She has made amazing progress. She showed such strength that day, holding it together as well as she did when so many triggers were there. To watch her struggle, and see how badly she felt afterward, hurt. To have family there who did not understand or believe this and just saw her as a brat broke my heart all over again. I know I cannot change what others think, and perhaps I should be grateful they (mostly) keep their judgments to themselves, but as her mom I am not. I want them to know her as I do and understand how sensational she truly is.