Part 1: The Beginning… Our Family’s Personal Journey With Sensory Processing Disorder (SPD)
Post Contributed By: Amy Svensson M.A., CCC-SLP
Our daughter has Sensory Processing Disorder ( SPD). There, I said it…. publicly. My husband and I know we are not the only parents with a child with SPD. We are not alone. It is my hope that through this blog series I can help other parents along their journey – validate and navigate together.
This is the first of a series of blog posts depicting our family’s journey muddling the way through SPD. I am not only a Speech-Language Pathologist, but also a mom and advocate for my child along the long and winding road of this disorder. I’ll start at the very beginning …
On April 5, 2004 I gave birth to my first child. She was born 3.5 weeks early via cesarean section weighing 5 lbs. She dropped down to 4lbs 5 oz at the time she and I were discharged from the hospital. As I watched her while she slept, I noticed she always clenched her thumbs. This persisted after she was 3 months old. Then her pediatrician noticed it at a well check appointment and asked how often she did it. I knew in my heart the answer was ‘almost always,’ but I was trying hard to push that away in my head and was in some denial saying, “Just once in a while.” I knew from my studies that infants (after 3 months old) clenching their thumbs could be a sign of neurological delay or a neurological disorder. Then my father-in-law asked me why our daughter clenched her thumbs all of the time. My mother gut kept turning and suppressing. There was a nagging feeling, but I just could not go there.
Before being discharged from the hospital, our daughter was diagnosed with unilateral hip dysplasia. Hugh? For 3 months she had to wear a special harness. My husband and I were SO grateful for all those sleep sacks we received as gifts. That is all she could wear. She had her first REAL bath at 12 weeks and my husband and I got to know the hour and half round-trip drives to UNC Orthopedic Center very well while driving to our weekly visits. All I was simply wanting was for things to fall into place and be ‘normal’ (what does that word mean anyway?). It seemed to be one thing after another since her early arrival. None of this helped with my Baby Blues. Nothing was going like it was supposed to, well not according to the daily episodes of TLC’s “The Baby Story” I watched leading up to her birth.
On top of being born over 3 weeks early and so tiny, our daughter had her 1st ear infection at 5 months (of course while my husband was out of the country for business). The ear infections persisted and at 15 months for fear of our daughter gaining a resistance to antibiotics and knowing she was hearing speech sounds as if under water during such a critical time in her development, I pleaded with her pediatrician to make the referral to an Ear, Nose, and Throat (ENT) doctor for tube placement. 2 weeks later, tubes were placed and it would be 7 more years before she would have another ear infection.
Was it her early arrival, chronic middle ear infections, heredity, or a combination of all that led to the SPD? Who knows. The reason behind it or cause is relative and does not matter. It does not change the fact that she has it and we forge on.
Signs of sensory sensitivities became at the forefront when:
- Noise: Any loud noise threw our daughter into a panic. Anything from a vacuum cleaner to fireworks. When we took her to the parade in Disneyland, she covered her ears and screamed. No wonder when part of the University of WI Band came to play for my cousin’s recession at her wedding, our then 3 year-old daughter ran out of the church. She was miserable! Her behavior showed this too. If she anticipated loudness, she became on edge and crabby.
- Brushing: To this day, our daughter can’t stand putting a brush to her head. I can’t tell you how many tantrums have ensued all to protest us getting her hair brushed. At 2.5 years old she had the meltdown of all meltdowns when I pulled out the brush. I had never seen her so upset. Not only did she not have the vocabulary to describe what she was feeling, but she emotionally could not explain it. Her anxiety was so built up that it got to the point that she would start misbehaving or having fits 30 minutes before she knew it was time to get ready for our day.
- Clothing: Tags?? Jeans?? No way!!! None of her clothes could have a tag – NONE! She had a ton of cute jeans. She wore them against her will probably until age 2 because I did not know she did not like the feel (looking back her behavior was so much worse when she wore jeans/scratchy clothes), but then when she had enough words to protest, that was the end of jeans. Well, until this year when she discovered she truly could tolerate the ‘new’ softer jeans that have since come out. She was so anti-jeans it took quite a lot of convincing her.
- Overly Cautious: Slides? Stairs? Monkey Bars? She wouldn’t have any of it! Our daughter was so timid and overly cautious. She did not go down a slide more than 6 feet high until after the age of 4. Even at age 4, she still wanted us to hold her hand going down stairs.
- Motion sickness: It did not matter whether we were riding in the car, on a train or in a plane. Our daughter always got sick. ALWAYS!
- Messy Face: Our daughter had no sense of food all over her face when she ate nor did she like having her face wiped or washed.
All of this is hindsight. When our daughter was in the midst of her tantrums, as a mom I felt helpless and defeated not knowing how to help her. Although I am a SLP, I am first Mama Bear. I still kick myself that I was not more ‘on top of it’ and more proactive right from the start. I guess I was just hoping it would all just ‘go away’ or she would mature out of the behaviors over time. Sensory Processing Disorder was not as widely known 9 years ago. I wish I knew then all that I know now about SPD. I was holding on…
The Mother Gut trumps all. It was when my daughter was 5 years old and in half- day Kindergarten that I picked up the book ‘The Out of Sync Child,’ by Carol Stock Kranowitz, M.A. I was tired of the battles and feeling disconnected from my daughter. I remember reading a sentence in the book that really struck a chord. It said, “If you feel that the bad times are out numbering the good, then it may be a good idea to seek professional consultation.’ That day when my daughter got home from her 3 hours of school and I told her we were going to head out to have fun she flipped out!!! Here our 2 -year old son was as content as could be strapped into his car seat and there lay on the garage floor was my almost 6 year old daughter having a 2-year old like tantrum. After taking quite a few deep cleansing breaths so that I would not LOSE it, I got down on the floor and held her tight. She right away calmed down. When I asked her why she did not like going in the car, she said “Because I feel every single bump.” This made perfect sense to me because our daughter was always fine once we reached our destination, but the transition leaving home and getting into the car was most always stressful. It was that afternoon that I knew my husband and I needed to take the next step. I called an Occupational Therapist and got scheduled for a Sensory Profile Evaluation.
To be Continued in Part 2….