Susan's SPD Journey

My name is Susan and I’m a single mom. At age 32, I was still single and saw my life long hopes of becoming a mom dwindle since I had not fallen in love and gotten married. So I decided to have a child by myself.

It took two years of difficult fertility treatment because I had some health issues that I did not know caused infertility. But I finally got pregnant. I found out I was having twins, a boy and a girl. That in itself is a long story, but most is not the story of my children with SID. My son, Isaac, died when he was a month old in the NICU. My daughter survived. They were born 7 weeks early. My daughter spent 3 ½ weeks in the NICU and came home weighing 5lbs.

My grief over the loss of my son and my twin parent status was intense. I decided to have another child. I was supposed to have two children in my arms! I got pregnant right away and had another daughter. She was 4 weeks early but luckily spent no time in the NICU. She had a hemangioma birthmark on her forehead that quickly grew. She had to go on steroids at 4 months old and start many laser surgeries over the next three years.

My twin survivor was a beautiful doll like baby. She looked perfect. With everything she did I wondered if it was because she was without her twin. Did she sleep poorly because her twin was not with her or because I probably had post traumatic stress disorder and doted (obsessed?) on her too much? Did she observe a new situation completely before interacting with the others because her twin was not with her?

She was a unique individual, always seemed different, smarter, interested in different things, dressing differently. As she grew up, now age 3, she would only wear soft dresses. She pretended she was Dorothy from the Wizard of Oz for 6 months all the time complete with Toto in a basket. She would not play with toys but would observe another person or animal and pretend like she was that thing exactly.

I noticed many things about her that did not seem “normal”.

  • Very sensitive skin, eczema, always scratching until she bled

  • Had to cut the tags out of all her clothes

  • Extreme separation anxiety and was afraid of being alone

  • Would stick her fingers down her throat and make herself gag and then laugh hysterically

  • Frantically stuff food in her mouth until it might choke her

  • Wanted to spin, spin, spin,

  • Wanted to be held upside down

  • Clumsy

  • Was horribly afraid of flies and would become hysterical if one came near

  • Didn’t like to be touched. Always pulling away from people and from me saying, “don’t touch me” or throwing a tantrum. I would sit next to her until she relaxed enough to lay against me. She never told me she loved me.

Was any of it because I lived in fear for a year or more that she would die in her sleep or someone would steal her away from me or was too afraid to leave her with a babysitter? Or that I cried with grief every time I breast fed her? What had I done to my daughter?

During this time, I was also dealing with her younger sister who had some difficult things about her as well.

  • Slept very poorly (woke up 4-5 times a night at least)

  • Would not go to sleep without a bottle

  • Was slow to eat solid food

  • Didn’t like any variety of food (would not eat any fruits or vegetables or anything that had any spec of a different color in it)

  • Would throw spooky silent temper tantrums when she didn’t get her way. They were typical tantrums but with no sound what-so-ever.

  • Was always moving, climbing, jumping and rough. I was always being hurt by her

  • Very stubborn and always wanted to get her way but she was fun and loving

Between the two of them I was completely exhausted. But they were beautiful, wonderful, fun, unique children. People loved them and enjoyed them. It was not all bad, most of their oddities were things we could live with, manage…. but the bad times were taking over. They were almost perfect at day-care. How could they be so good with others and so difficult with me?

Then, the behavior started changing with my oldest daughter. Every response to anything I said, asked, suggested would be met with a screaming “NO!!!” and a tantrum. I became afraid to say anything because the last thing I wanted to hear and deal with was that response. Then, any response to her tantrum caused the situation to escalate. Typical parental behavior responses did not work and actually make the scenario worse.

I dreaded going to go pick them up from day-care. I cried every night after putting them to bed since it was such a nightmare. I had to crawl out of the room after my daughter finally went to sleep so that she would not wake up and see me and cry for me to come back. The smallest noise would wake her up, the floor creaking, my ankle cracking. They would grab at me, cling to me, climb on me, much of the time. I could not hold my patience. I would get angry, furiously mad and feel so guilty about my behavior and the tantrums I’d throw.

I started to notice other things about my oldest daughter.

  • Would beat and claw at herself if the wind from a fan blew on her skin

  • Flap her hands and rock back and forth crying, moaning if she got herself so worked up because (for example) I wanted her to get out of the bath tub before she was ready

  • Refused all medicine. There was no hiding medicine in any food or juice. Everything had to taste the same every time.

  • Could smell anything and all smells were over powering for her and she would gag often, comment that I smelled so bad that she could not sit near me or others

There were things that I had trouble with both of them.

  • Hair washing, hair brushing, teeth brushing, putting on lotion, finger or toe nail clipping caused a tantrum, fight or struggle.

  • Walking in wet grass

  • Neither wanted messy hands

  • Never wanted to wear a jacket in cold weather

  • Fear of vacuum cleaner, blender, loud and soft noises.

  • They had their hands over ears at odd times

If I had to take them with me, shopping worked best when we brought blankets and pillows and covered them up in the cart. We made a house and they pretended to be a dog and a cat complete with barking and meowing and “good dog, good kitty”. We got smiles, stares, laughs but it was worth it to have a pleasant shopping experience and get something done.

Oh I had stories, great stories that seemed to set us apart from other families about obsessions with heavy snow globes, carrying heavy purses, leaving parks because of a dog barking or a truck backing up, underwear checks before leaving the house. My youngest did not like wearing any clothes and was always stripping. The list goes on and on with the nutty, odd, maddening things that would occupy our weekends and evenings.

Our Pediatrician said that nothing was wrong, that I needed to be more strict, and my friends or co-workers would imply that it was my parenting skills, that it was a phase, that it would go away or I needed to do something differently, all a part of being a parent, you never knew what your child would come out like.

Luckily I had been in contact with a SID mom on a parenting board who kept at it and would bring up sensory issues when I would post about certain problems I was having. I finally admitted I could not do it alone, that there was something wrong and in desperation I contacted an OT.

In October and then November of 2005 my girls were diagnosed with sensory processing disorder and we started therapy. I started my learning on what I needed to change to help them get what they needed and in turn, I got what I needed!

I learned about how to get them the sensory input they needed, how to redirect and stop a tantrum almost immediately. We started a brushing and did joint compression protocol which I noticed a change (for the better) in their behavior right away. Later we participated in a listening program. I found solutions that worked for us to help us all sleep until we could deal with things better. We all slept together in a huge bed and comforted each other. I searched the internet every night for ideas of ways to get them what they needed throughout the day.

Now, I am happy to be able to say that:

  • I have two girls who tell me they love me and sometimes that I am the best mom ever

  • I hear them telling saying “I love you” to each other!

  • I have a daughter who lets me and others give her hugs or comfort her

  • I have a daughter who will eat fruit and vegetables and try new food

  • They now respond appropriately to temperature and change in weather

  • I usually get enough sleep

  • Our routine can change without total chaos

  • I can forget and respond “normally” to them and it won’t ruin the entire night

And that’s just a start of the list that has improved in our lives.

As our sensory therapy continues, they still do not like to wear socks. My youngest still calms herself with a bottle at age 4, does not like to get her hands messy and gets tired easily. We still have some sleep issues, they still cover their ears if I yell and they still get tired and over loaded and still need some sensory diet in their day.

If anyone had asked me if I believed things would be this much better after one year, I would not have believed them. Diagnosis and therapy saved our family and made all of our lives better. I will continue to learn and help them as they grow and learn so they can have happy, fulfilling lives.

Submitted  by Susan... Mom of two girls with SID/SPD and a sweet twin son who is forever our baby.

Reprinted with permission.

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Related Resources

Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues, Revised Edition

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder - The New York Times calls it the parents bible for Sensory Processing Disorder

Real Stories of SPD Families - It's time we told the real stories of SPD Families. The struggles, hardships, pain, sorrow, hope and strength of parents willing to share their personal journeys.

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