SPD Resources and a Big Thank You to My Readers
Last week, I wrote about my daughter’s Sensory Processing Disorder diagnosis and the challenges she is facing with motor skills and reflexes. It was a post that I labored over for two weeks, frequently unsure if I should share that much personal information about me and about my daughter. But you all made me realize it was the right thing to do. You talked about SPD, you shared your stories and your resources, you shared the post with people who are struggling to understand their kids, you encouraged other parents, including me, to not feel guilty, and in the most amazing instances, you helped to give a name to the challenges that some parents face every day with their beautiful, sensitive children. Some of you also told me that you gained more awareness to have compassion for children who don’t always behave as we expect them to.
And some of you who know us shared a new understanding of my daughter, The Bee (if you’re new here, she is called The Queen Bee or The Bee on this blog and here’s why). The kindness and understanding you are showing her is touching my heart, and THAT is why I wrote about our struggles and challenges with SPD. Because I want her life to be filled with caring, accepting, compassionate people who will treasure her because of who she is, and notice her beautiful smile or her artistic talent or her great sense of humor, rather than giving her disapproving looks because she won’t put on her shoes.
I apologize for not being able to respond to all the comments individually, but please know how much of a difference you’ve made this week for me and my family and for other families who are dealing with similar challenges.
Many people have not heard of SPD. Kids with SPD are often misdiagnosed with ADHD or autism. Babies with colic may really be exhibiting sensory issues or reflux or both. SPD is not in the Diagnostic and Statistical Manual of Psychological Disorders, nor will it be included in the next updated edition, despite advocacy efforts. But we have the internet and we have people all over the world willing to share their own journeys and that is nothing short of amazing.
The other theme to your responses was compassion–for kids who are challenged with many things, not just SPD, and the parents who are doing their best to understand and love and care for them. Thank you for hearing that message, for passing it on and for supporting me in my journey to become a more compassionate person.
Speaking of compassion, Jean from Stimeyland wrote a great post on PokitDok about how to respond to strangers who are rude to special needs kids. In her case, she is talking about her son, Jack, who has autism. Go on and read it, then come back. I’ll wait right here.
Are you back? Ok, good. Her post struck a chord with me. The first place I go when someone looks at my daughter with a raised eyebrow, or comments, “Aren’t you cold?” because she is wearing a nightgown and sandals to the mall and it is 30 degrees outside, is to think of something very snarky to say, like “She has sensory issues. We’re getting help. Unfortunately, there isn’t such readily available help, nor a good prognosis, for people afflicted with rude and nosy behavior.” I’ve never actually said that. But I might. If you catch me on a particularly trying day.
Instead, what I hope to do is take these moments as an opportunity to educate, to make people aware that this is not a child who is being strange or defiant. In fact, she is working very hard and doing the very best she can and we are super proud of her. She put on clean clothes today! We got to the mall! On this particular day, it took us hours to get ready but we are here. That is huge.
Some, like the lady at the mall, leave it at that, just one comment. Others continue the line of questioning. Or accompany it with judgy looks. While the mama bear in me wants to roar at people to mind their own business, I’m going to try very hard not to. Because I want to teach my children not to be rude, but to exhibit compassion. “That poor person. They’ve probably never heard of sensory processing issues. I hope they learn more about it so they don’t say rude things to kids anymore.” This takes the focus off of the way my child looks or is behaving and puts it back onto the other person. And that’s exactly where it should be.
And here’s another reason why you guys are wonderful. You have great resources and you were very kind to share them. Here’s a list of the most frequently mentioned and most awesome resources:
My Daughter’s Non-Disorder by Melissa at Imagination Soup. This post itself is full of resources that warrant further exploration.
The blog Hartley’s Life with 3 Boys is a wealth of information on raising kids with sensory and other issues. I am going to sit down one night this week and read ALL of her posts. This is an awesome resource.
Fun and Function website. Many people mentioned this as a resource for products that have helped their children.
Soft Clothing website. We’ve ordered some things from here and can’t wait for them to arrive.
Hanna Andersson clothing. We’ve had some success with their clothes with my daughter and others mentioned this company also. They have flat-lock seams and several options for dresses that don’t have any seams at the waist or chest. Their underwear and pajamas also work great for some children’s sensory issues.
Let’s keep working at this together: Sharing resources and stories. Showing compassion for kids who do things just a bit differently and kindness to parents who are doing their best to help, advocate, love and cherish their kids through all of these challenges. Spreading the message.
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