Our Family May Seem Different

Oh your son looks normal, is what many people say about my sensory kiddo. And yes, he is. But he also has extra needs that make him unique.

Today on Voices of SPD we are joined by Kristen of The Judy Journey, who talks about how her family may seem different or unusual because of her daughter’s Sensory Processing Disorder.

But the love… the love is always the same.

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Our Family May Seem Different

Having a Child with SPD Means Our Family May Seem Unusual to Others

Having a child with Sensory Processing Disorder is hard. I haven’t written much lately about the struggles we still have with Ashley. It remains a huge part of our lives and sometimes I fear talking about the really hard moments. The moments that cause my face to go red, fear of her future to creep in, and the need to simply protect my daughter from herself. Yes, honestly, the really hard moments are often really raw.

Sometimes they are realizing how different my child is right now from other kids. I watch Ashley stumble and fall so much more than kids her age, get food all over face while eating at birthday parties (when other kids younger than her aren’t as messy), and other children look at her with uncertainty when they don’t know how to respond to her often awkward interactions. These moments are painful. They painfully remind me that she is different and that she has many quirks and different needs. I love these unique things about her because they are her. That is what makes her my Ashley and how I know her. But I would be lying if I didn’t say these things don’t also often embarrass me or cause me frustration.

Sunday School and Sensory

We dropped her off at Sunday School a week ago and she was in complete resistance. I suspect it was a moment when the transition of home to church just didn’t go well, and she later said her tummy hurt. A bad combination. Transitions can be difficult with SPD. Combined with physical discomfort, it can be a nightmare for Ashley. Thankfully, she had a much better morning yesterday.

[bctt tweet=”Transitions can be difficult with #SPD. “]

A week ago though, I was standing in the hallway of the children’s wing, holding my 4 year-old who is loudly crying and saying “no” with her arms flailing and feet kicking. She was transferred to the arms of one of the wonderful teachers, who all know about Ashley’s SPD, and was held for a while but was still crying after almost 10 minutes. Ben and I listened down the hallway for a bit and then removed her from the classroom so we could calm her down and she could then sit with us in church for the worship time. It was unusual for her to get that upset at church so we felt it best to remove her from the situation and comfort her ourselves. After worship time and talking with her, I took her back to class and she was fine. Tantrums in public are hard with a 2 year-old, but they are even harder in some ways when you’re with a 4 year-old in full SPD freak-out mode.

Having a child with SPD also means our family does some things that may seem unusual to others. I’m sure Ashley is carried more than most kids her age. This is for many reasons. Sometimes it’s to prevent inevitable falls. It’s just so much more convenient to carry her when we are in a hurry, have some considerable (for her) distance to walk, or are in a crowded place. Falls bring tears, embarrassment (for us all at times), and occasionally even blood. Sometimes we carry her to prolong the use of clothing. Ashley loves to crawl on her knees, quickly creating holes and wear and tear on her pants and tights. Frequent falling also further contributes to the ruin of clothes so depending on what she’s wearing, she may be carried to prevent that as much as possible.

[bctt tweet=”Having a child with SPD also means our family does some things that may seem unusual to others. #sensory”]

I also carry lots of stuff. I no longer have an infant or 2 kids in diapers but I still carry a lot of stuff with me. It’s necessary for me to always have on hand some things for Ashley. These things are fidgets for her such as a motion bubbler, brain noodle (we call them furry things), a tactile ball or two, stickers, and food. Really I always have food for both girls because Ashley has food issues so I always like to have some of our unique snacks with me. I’d like to think I’ll get to travel more lightly after Emily is potty trained but I think I will need to have fidgets for Ashley for a long time and that’s okay. They literally are the only reason I can run errands or get through appointments most days.

I have been hit and kicked countless times by Ashley. She doesn’t mean to hurt me, but when she “freaks out,” her limbs sometimes get out of control. I find myself standing behind her or holding her on my lap and giving her a tight bear hug, holding her arms down to protect herself and others. Ashley still head bangs or hits herself at times. It breaks my heart, but it’s SPD. I intervene as quickly and as best I can. She flaps her arms wildly when she is really upset or overwhelmed. If there is something she really wants to do or if someone has something she greatly wants, she cannot LET. IT. GO. I mean really, she can’t. It’s almost impossible for her to switch gears, focus on anything else, or talk her through it. This happened last night over a yellow tutu Emily was wearing that Ashley wanted. It’s exhausting.

There are days when I can’t peel her off of me. She is needing extra physical contact and it’s all I can do to walk 2 feet without her hanging on or pulling on me (with all her strength because she’s a seeker). She’s strong and needy and all that sensory seeking comes out onto me. I love her closeness, her snuggles and hugs, her rubbing her chin against my face in those moments. But it’s equally hard too. I eventually need my space, some rest.

Some days I’m so overwhelmed by all the needs of Ashley, her quirks, her list of things to work on. Other days our challenges seem so small compared to others I hear about or know. It’s the roller coaster of emotions of just dealing with what I’ve been dealt. I’m so thankful for resources so we can learn and move forward, God’s grace to get us through the hard moments, and for all the ways He has made Ashley uniquely ours.