Faces of SPD… Meet Shae

Every night when I say “Goodnight” to my Shae-Shae, I tell her that she is loving, kind, caring, friendly, funny, intelligent, smart, important and very special.  This started when she told me one day at the age of 5 that she was intelligent.  I realized that I always tell others how intelligent she is but I didn’t make a point in telling her.  Shae is very intelligent and has an impeccable memory, which can often make life more difficult. Her level of intelligence and desire of independence doesn’t match her level of capabilities. Shae is full of compassion and laughter.  When she starts giggling it is contagious.  You could be in the absolute worst mood and still end up laughing when you hear her giggle.  These are qualities that make everyone who meets Shae fall in love, with her even after experiencing one of her meltdowns.

The day Shae was born she was stared intently at everything.  This is where I would say the first signs of Sensory Processing Disorder (SPD) were present.  At the time we just thought Shae was a very serious baby.  My husband and I commented on how she seemed to be taking in EVERYTHING.  Shae’s eye contact was off and there was something different about the way she interacted, cuddled and bonded with me.  There was a disconnect as if she could take it or leave it.

At three months, I started taking Shae to Gymboree.  That experience really revealed to me how different she was from other babies.  The activities that other babies hated, such as being upside down, Shae loved. She could be upside down all day if you let her. When you held her she would throw herself backwards to be upside down.  She hated the activities that other babies enjoyed, such as looking at mirror during tummy time.  She loved really rough play.   But yet, she did not like being cuddled and held like most babies.  I thought it was because I had to have a C-section.  I had a bad reaction to the epidural, so I could not hold Shae right after she was born and bond with her.

I used to say Shae was difficult but now I understand it is SPD.  She never napped.  She only slept for two hours at a time during the night.  I have learned that it was an oral motor issue and she was not getting enough food while nursing because of problems with sucking.  Shae didn’t and still doesn’t feel much pain.  I never knew when she was teething.  Now she may cry when she gets hurt but it is often from social conditioning rather than feeling pain.  As a baby, Shae loved the bouncy seat and swing.  It was the only time that she kept herself occupied.

Shae was thriving physically so no one seemed to be concerned.  More and more red flags popped up at, she was not meeting the developmental milestones on time, except for sitting up on her own.  She didn’t crawl until 13 months. She did what we call the backstroke across the floor. When I told this to the pediatrician, he showed no concern.  We were always told, “She is a big baby; she’s just a little slower. She will catch up.”  Later we learned the backstroke move was a HUGE red flag!! WHY didn’t the doctor know that?

At about 7 months, I started to get concerned about the fact that Shae did not seem to be like other babies. Every well checkup and doctor visit, I would ask “Is this normal?”  I would be told “Well, she is a big baby, some babies develop more slowly.”  Finally at 15 months a nurse practioner listened and gave me a referral to have Shae evaluated.  She was a little concerned Shae was not using a fork to feed herself and that her language was not really where it should be.  The actual evaluation did not happen until she was 17 months.  I was expecting to hear that she would need help with speech and maybe help with walking.  Never did I expect to hear she was extensively delayed in all areas of development.  Why would I?  I had been told over and over she was fine and she would catch up.  I cried!  I felt like my world was just turned upside down.  How was I going to handle this!  I was pregnant with my son at the time.  How was I going to give Shae everything she needed while taking care of a newborn?  At that time, she was diagnosed with Global Developmental Delays and needed physical therapy and speech therapy. We lived in Virginia and Early Intervention did not have occupational therapy.  The speech therapist recommended that I read Out of Sync.  I read the book but it is geared more toward preschoolers and older children.  I could not relate to what the book was describing.    We decided to take matters into our own hands and get as much as help as possible.  We were not accepting a four to six month wait for help.  How insane  to think that it would be okay to wait four to six months during a crucial developmental period of a child’s life!  We started going to private physical and speech therapy.  Her therapists also suggested occupational therapy.

It was during the evaluation at the occupational therapist that Shae was diagnosed with Sensory Processing Disorder.  We started floor time occupational therapy and I began to understand what was or wasn’t going on in Shae’s brain.  Light bulbs started going off!!! Her behaviors started to make a little bit of sense.  I say a little because 4 years later, I am still learning and just when I think I “got it”, “it” changes.

We moved to New Jersey and continued with private occupational therapy, physical therapy and speech therapy.  We also received Early Intervention services.  It was during this time, that I finally read Sensational Child by Dr. Miller.  After reading the book, I thought wouldn’t it be great to go to the STAR Center in Colorado.  So I called and we were able to go for a week evaluation and then a few months later for a three week intensive treatment program.  It was amazing!! We learned so much there that we were able to bring back and use ourselves and give to Shae’s therapist.  I wish we could go back every year.

Shae has come so far since her first evaluation.  She doesn’t think twice about going to the doctors.  I think if she had a week with no doctor visit she would think something was wrong.  But we have left no stone unturned to make sure we are doing everything we can.  She is talking up a storm!  She goes to equine therapy instead of physical therapy and loves it.  She has an indescribable connection with animals. Her face lights up and her demeanor changes around animals (our cats may wish she did not like animals as much). She loves swimming.  I think it is because being in the water makes her body feels like everything is in place.  We started the Young Athletes Program in the Special Olympics which has offered her the ability to play sports.  She has a hard time playing with friends and keeping friends but she is the most compassionate and caring girl.  All she wants is to be friends with everyone and to be one of the girls playing.  It is hard for her because she ends up hitting when she can’t process the proper words for the situation.  She also can’t keep up with motor planning issues with the play that other girls are involved in.  She gets frustrated.  She has no impulse control, which can be very dangerous and get her in trouble especially with other children.  It can lead to a situation with her taking something from a child even though she knows she shouldn’t but can’t stop herself.  The lack of impulse control also leads to lack of fear.  She is in constant motion!! Her nickname is the Energizer Bunny.  From the moment she wakes up to the moment she lays down at night, the button is ON!!!  Somebody forgot to give me that amount energy to keep upJ

I call Shae my “therapy child” Meaning that there are therapy dogs which are taken to nursing homes to cheer up the elderly.  Well, Shae is my therapy child when we go somewhere she is always saying “Hi” to everyone. It does cheer up a lot of the elderly who are the grocery store.  It scares me though because she has no stranger fear.  One day at Costco she wanted to give everyone eating a top for their drinks.  She went around to the tables and passed out drink tops.  People call Shae The Mayor.  She knows everyone and they know her! She is unforgettable.

Nothing will be routine for Shae.  But I will do whatever it takes to make everything as routine as possible.  She will be a remarkable adult because she is a remarkable child!