This article is written by Rachael Wood
For more on this topic, check out the full Early Intervention collection
I wish I could start my story 19 years ago when my oldest daughter, Michaela, was a baby, but she went undiagnosed until she was 13 years old. It was not until my youngest daughter, Angie (now 10 years old), was three, that we realized what sensory processing disorder (SPD) was.
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Angie was an amazing gymnast at three years old and was in a class with five and six-year olds. But she hated to wear leotards. At ballet, she would never wear tights. These were activities that she loved, but the outfits were becoming an issue.
She soon began to wear the same clothing daily and quit her activities. I thought it was a phase (my oldest had gone through this). But it got worse and she became more and more picky about tags, seams, fit, etc. She would be naked at home at all times. Leaving the house seemed impossible most days because I could not get her dressed.
The constant meltdowns were rough on our family and on her. Brian, Angie’s father, and I searched for clothing that was soft enough for her to tolerate. I felt like I was doing something wrong. I watched my friends do so many activities with their children and I was stuck at home with a little girl who could not even get dressed.
We finally talked to the pediatrician when she was four and started play therapy. Her therapist recommended occupational therapy for the sensory problems. So we went to Schreiber Pediatric Rehabilitation Center. Angie was diagnosed with anxiety and SPD (sensory processing disorder). That is when we knew that our oldest daughter was misdiagnosed and the guilt was awful. We could have saved her so much stress if we knew why she had such a hard time finding clothing that she liked.
We started weekly occupational therapy for Angie. It seemed to help and after six months she was discharged. But, within three months, she regressed and we had to return. This time she was not as willing to cooperate with her therapist and did not do as well. We tried everything to help her. It felt like one step forward, two steps back. Every single day was a struggle. I didn’t know how to help my little girl.
She was the smartest kid though! She was so talented in everything she tried, but she quit everything, no matter how good she was! Why? Why can’t we just have a normal life?
This is where the anxiety gets her. She is great at things, but the smallest event can change her mind and she never wants to do it again. Gymnastics, ballet, swim team, and horseback riding. She loved them all, but could not handle her anxiety of failing or not being the best. She has to master everything she tries, but quits when it gets too hard or something stressful happens. So we stay home (except when she is at school). She likes to be home. This is her safe place. Where she can draw, write music, and just be herself. No judgement.
Angie also went through major separation anxiety. I could not leave her – EVER – from an infant until she was in preschool at four years old (even then it was so difficult for her). The teacher would have to get her out of my car crying – it was so hard. We made a goodbye routine in the car on the way to school. She would blow me kisses and I would catch them on the way to school. It wasn’t until first grade that she started to get better at leaving me without it feeling forced.
Life was rough for our little girl. She loved fashion, but shopping was a big challenge! We would sit in the dressing rooms crying together, frustrated that nothing felt right on her little body. Every single piece of clothing felt like a million needles in her skin.
These experiences resulted in Brian and I deciding to try to develop a clothing line for children with SPD. After two years of concept and development, I successfully started making reversible clothing that Angie could wear. We learned that cotton (although soft) has millions of little fibers that her sensitive skin can feel (and it hurts). So we sourced one of the softest synthetic knit fabrics in the world, Micromodal. This is the only fabric that Angie can tolerate for long periods of time. I finally felt like I did something right!
At eight years old, Angie began taking Zoloft. This was only after three years of her psychiatrist recommending it. Medicating our daughter was not an easy decision. It wasn’t until we met other parents who said that their child’s quality of life was so much better on medicine. Angie was depressed, cried at least 60% of every day, meltdowns, and always agitated. She would say she doesn’t understand why she is different and why is she alive. She even mentioned dying a few times.
I cannot tell you how bad it hurts to hear your child wish they were no longer alive. It destroyed me inside, and scared me more than anything. But after starting Zoloft, we have noticed an amazing difference in her. She is happy!
Angie still loves fashion and enjoys designing her own clothing. But she still loves shopping. It is not easy, but we can usually find a few outfits that she can wear!
She still has bad days (don’t we all). An outfit that I made for her that felt great last week, may be “itchy” this week. And she still has extreme anxiety. Every day we have a special box that Angie can write her worries down on a piece of paper, she crumbles it, and puts it in a box. This makes her feel like she is leaving her anxiety or “worries” at home. Sometimes it is mind over matter, and it actually works!
This is my story so far. Being a mother of three incredible girls, two with SPD and anxiety. Since we missed diagnosing my oldest at a young age, she manages with the help of medication. She has also been diagnosed bipolar, but not until she was 18 years old. And that is a whole other story!
Here is a list of some things that have helped me and my daughters with SPD and anxiety, to print this list click here:
- Patience – I know it sounds crazy and every parent should be patient. But when having a child with SPD, you really have to stay calm. They are extra sensitive and can definitely sense when you are upset, agitated, and frustrated. Trust me, it is FRUSTRATING! To have an appointment you need to get to, but your child cannot find anything that “feels right” and is screaming and kicking on the floor. I just wanted her to get dressed! How hard is it? Well, now that she is older and can really explain it to me – it is so hard on them!
- A Safe Place – home is a safe place. Have you heard that your child is an angel at school and the teacher probably thinks you are certifiably insane for thinking something is wrong with your child? But the second you walk through your door, you are dealing with a one-hour meltdown that nothing triggered? It is because they feel safe to be themselves at home. They have done what you have taught them and behaved all day. Hiding all of those extra-sensitive emotions. So have a room (or walk-in closet if you have one) that is his or her safe place. Make a sensory corner with a bean bag chair, sensory toys, books, and a weighted blanket. That is where they can go to have that much-needed meltdown. The more you try to pull them out of a meltdown, the worse you will make it. They need to get through it. This is much different from a tantrum, so don’t punish them.
- Anxiety Box – I had mentioned that my daughter writes her anxieties or worries on paper and seals them in a box to leave them at home – it works! Have your child decorate it to make it bullet proof – the anxiety cannot get out once you close that lid!
- Routine – routine is very important to these kiddos. I try to keep a routine here, but I have teenagers and I notice the stress it puts on Angie when we have to run out unexpectedly. I always try to prep her for the day if I know we have things to do.
- Watch What You Say Around Your Child – I know that we all know this. But I know that Angie hates when I talk about her in front of her. It makes her feel bad. That is the last thing I want to do! If you are on the phone, take it to another room if you need to talk about any issues.
- Weighted Blanket – these are a life saver in my home! For me too! The weight from the blanket naturally releases serotonin, which calms you. WE ALL need one!
- Don’t Wait and See – if you think your child has sensory issues – get them checked out! Don’t do what I did with Michaela and think they will grow out of it. They don’t. I wish I had known. Not that she didn’t turn out amazing – because she did – but I could have helped her when she was younger.
- Take Care of Yourself – I am bad at this one! But having a sensitive child is exhausting. Try to make time for yourself to refresh. I am going to start horseback riding lessons for myself – I can’t wait to start! Whether you go to the gym, go for a long walk, just binge on your favorite show – whatever YOU need – make time to do it! Happy mommy = calmer mommy
- Don’t Blame Yourself – I am bad at this one too – what the heck did I do to my kids? I don’t have SPD, but I definitely have anxiety – so at least I can partially relate to them. I feel so guilty. BUT, it is not my fault.
- Just Breathe – The meltdown will be over and you can move on with it.
So those are my tips. I’m sure that there are more out there, but this is what works for us.
For more on this topic, check out the full Early Intervention collection
Some resources locally in Lancaster, PA:
- I found the most amazing play therapist – so I can only recommend her:
Laurie Parke, LSW, MAMFT
903 s. Chiques Rd, Suite J, Manheim, PA 17545
- If you need a psychiatrist for diagnosing, we have had a great experience with Philhaven:
283 South Butler Road, PO Box 550, Mt. Gretna, PA 17064
local: 717-273-8871 toll-free: 800-932-0359
- And as mentioned above, we worked with Schreiber Pediatric Rehabilitation
625 Community Way, Lancaster, PA 17603
Some online resources:
There are also some amazing support groups on Facebook. Just search sensory processing disorder support group and you can join as many as you’d like. It feels so good to know that I am not alone!
Thank you for reading my story. I hope it may help you understand SPD and what life is like living with SPD.
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Featured Contributor: Rachael Wood
Rachael is the mother of three incredible girls and the owner of Komfy Couture. She is passionate about designing comfortable and fashionable clothing for children and making custom weighted blankets. She lives in Lititz, PA with her fiancé, Brian, and her daughters, Alison and Angie.
- Website: www.KomfyCouture.com
- Email: Rachael@komfycouture.com
- Facebook: www.facebook.com/KomfyCouture
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