Hand to Hold's Official Blog: Written by Parents for Parents

Oh, THOSE Red Flags: Sensory Processing Disorder

When you have a pregnancy that results in the premature birth of your child(ren), you learn pretty quickly to be grateful for every morsel of positive progress. If there’s time before birth, a neonatologist may share with you some worst case scenarios. And by the time you leave the NICU, you feel like you have either won the lottery or narrowly escaped from prison. Some preemies are sent home with an intensive care plan and some do not require monitors, oxygen, feeding tubes, caffeine, follow up surgeries and more. Either way it’s a gift from above to be a home and your baby(s) is nothing short of a miracle.

When my son suffered an umbilical cord accident at 22 weeks and passed away, it sparked the premature birth of his twin sister at 25 weeks, 6 days. Despite being intubated, having an irregular head scan, a PIC line, feeding tube, and several blood transfusions, we were fortunate enough to take my daughter home before her actual due date and with no intensive care plan.

It’s been amazing how little effect prematurity seems to have had on her over the years. Right after she turned five, frustration started to build in our household, though. Why is dressing her such a major event? Why does she say clothes don’t fit right when they clearly do? (Insert 15 minutes of trying to negotiate clothing with her.) Why do her socks have to line up perfectly with her toes and why can’t she allow for a little slipping in the heel of her shoes? (Insert another 15 minutes to talk her into shoes and socks.) Why does she scream like she’s on fire when I brush her hair? (Insert 15 minutes of trying different sprays and brushes and then just give up.) And why won’t she even let us wash her hair in the bathtub when she seems to be having fun otherwise?

Occupational Therapy

Kate, 5, at Occupational Therapy

I’ll tell you why. Because in “Preemie Land” this is how our children tell us that they have a Sensory Processing Disorder. Bless her heart, this went on for quite some time before I asked my sister and stepmom what they thought was going on. As a teacher and physical therapist, they told me to get an Occupational Therapy assessment as soon as possible.

It’s a good thing we did, because the signs we were seeing were the tip of the iceberg compared to the way the disorder was affecting her motor skills. It turned out that visually she lacked binocular vision and depth perception. Her brain also was incapable of allowing the left hand to cross over to the right side of her body and vice versa.

According to the SPD Foundation, “Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. In children whose sensory processing of messages from the muscles and joints is impaired, posture and motor skills can be affected.

A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

Occupational therapy with a sensory integration approach typically takes place in a sensory-rich environment sometimes called the ‘OT gym.’ During OT sessions, the therapist guides the child through fun activities that are subtly structured so the child is constantly challenged but always successful.”

My daughter Kate has been in weekly Occupational Therapy now for six months and the improvement has been dramatic. It affects her self-confidence, she is able to participate in ballet now, and she seems to try new things on the playground without hesitation. If you have any concerns of your own, I sincerely hope you will request an assessment or talk to your pediatrician about one.

 

 

 

Babs Haller About Babs Haller

Babs (TX) is the mother of premature twins, Jack and Kate. Jack was delivered at 24 weeks following an umbilical cord accident and died. Kate, born two weeks later, spent 59 days in the NICU. From age 4, she has required occupational and vision therapy. Babs is passionate about supporting families affected by loss and prematurity, raising funds for prevention research, and serving as an awareness ambassador. Babs is proud to have been the first staff member of Hand to Hold. View a video about her experience or email her.

Comments

  1. Oh, I could go on for hours about this. We are starting to get some help for our ten year old with very similar sensory issues. He was born at 35 weeks, but we were given little to no training in how to care for a baby that was born early. He was sent home 4 days later. We struggled, he struggled, and he continues to have many sensory issues that we are just now figuring out. Our second son is 15 months and was born at 32 weeks. We were given tons of training on over-stimulation and preemie care. He was kept in the hospital until he was ready to come home. He so far, has shown no signs of sensory issues, though I know they can pop up later. Trying to start now in dealing with OT for a ten year old has it’s challenges. He is resistant and defiant about it. I pray we can get these under control as he is really having a hard time with daily cares such as teeth brushing, hair washing, socks, fingernail clipping etc. It seems to be getting worse as he gets older. I just hope the help hasn’t come too late.

  2. My daughter was born at 27 weeks and seems to show no negative signs from her prematurity yet. She just turned 3. However after reading this I’m scared that I’m missing something. Whenever I brush her hair -no matter what brush or how gently- she always tells me I’m hurting her! I always just assumed she was over reacting or just doesn’t want me to brush her hair. Is 1 issue such as that enough to diagnosis a “disorder” vs she has a sensitive head vs she’s just manipulating me?

    • My daughters were born at 30 weeks. One had no adverse affects while her sister has been diagnosed with ADHD, auditory processing disorder and short term memory issues. My first clue was in the bathtub when she was a baby. She hated the feel of the water, the cloth and drying off was a nightmare. When she had enough hair to have to brush and wash it was a nightmare and at 8 1/2 now it still is. I would have an evaluation done if only to relieve fears and allow you to treat her appropriately. I totally understand how difficult it is to manage symptoms and discipline at the same time. Good luck!

  3. Laura – I would recommend an eval – you have nothing to lose…either they tell you there’s nothing to worry about or you find out she may have sensory issues in which case you have therapy to jump on. My daughters were 25w 5d and sensory issues are all we deal with and my one daughter loves going to OT every week…for her it’s just fun. I’m actually going to get an eval for her sister b/c while my 1 daughter has had very obvious issues, the other has been more subtle and manageable. Now at 6 years old, things like Babs mentioned in her post are becoming more and more difficult to handle.

  4. All I can say is that I’ve saved this post to read it more tranquil, but my alarms are going off. I’m Briel’s mom, she was born prematurely because of Vassa previa, and being an SLP I was actually mentioning these fears to my husband, because even when Briel is only 11 months old now, (9 corrected) she shows… “certain things”. I don’t know. Just thanks for this post.

  5. I have a question about my 20 month old son. He was born at 28 weeks and since he could sit up at 8 months old, he has rocked and bounced. If he is sitting in a chair or his carseat he rocks very hard. In his highchair he can move it across the room by doing this. If he is on the couch he will bounce himself off the back of the couch, and he is always humming when he does this. Should I be concerned or can this just be chalked up to him being a very very active little boy?

    • Hi Karen. It’s definitely worth mentioning to your pediatrician if it’s raising red flags for you. Trust your instincts. Your pediatrician should be able to determine whether or not you and your son should see a specialist. 🙂

      • Thanks so much. I have mentioned it to them and they see nothing wrong with what my son is doing. They say it just a part of him being an active little toddler. I guess I just get worried over every little thing being not only a 1st time Mom, but also a preemie Mom.

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