My Humble Pie

I wrote this back in March on my family blog. I am copying it here since this is why I do sensory play now! 

This post has been a long time coming. I've been writing it, and rewriting it over and over again in my head for months. It never has seemed just right. So I finally decided to actually type it out. Here goes. I'm writing this for my own record but also because I know others out there are struggling with this with their kids and need information and to know it can get easier.

I always thought I would be a great mom. I thought parenthood would be a breeze and that I would be a natural at it. I was a great babysitter growing up and loved almost every minute of being with kids. I studied Human Development in college and therefore was just getting extra tips on how to be an even greater mom. We joked in our program that it really was a MOM degree not Family, Consumer, Human Development. Ya, try saying that one 10 times fast.

When we had Little Lady over 4 years ago I thought my blissful journey of snuggles, love, endless joy, and being a great mom was beginning. Boy was I wrong. It was anything but that. I remember the nurse who gave Little Lady her first bath at the hospital saying "This is the loudest baby I have ever bathed", we all laughed at that and I didn't understand what that really would entail till later. For 3 years I struggled with my daughter. I didn't know any different. I didn't know something was truly wrong. I was hanging on for dear life while trying to figure out how to be this child's mother-something I thought would come naturally and easily and it didn't. Every day was a battle. Most days we were both in tears. It was rough. No one else truly understood what was going on. A child acts differently when they are in the comfort of their own home. I would try and talk to people about it but after a while you get sick of hearing things like "oh every baby cries a lot", "you're lucky she sleeps at night, you can survive without naps", "every kid throws temper tantrums", "she's just being a kid"...and so on. I kept thinking, what am I doing wrong??? I didn't completely understand how abnormal of a toddler she was until I had our second child and he was so completely, utterly easy!!

It was a year ago this month that my life began to change. Lil Lady was just over 3 years old and I was having a super rough day with her. I remember I was driving to Winco to grocery shop and I called my oldest sister to vent. She started me on a journey that has literally saved me. She asked if I had looked into early intervention at the local school. A light clicked. I hadn't even considered it. I sat in the parking lot for about 20 minutes talking to her and the kids were asleep through it all. Rather than wake them up to shop, I turned around and went home. I called the school district and set up my first screening for Lil Lady.


After they asked me to leave that screening they told me the local school would call me to set up a 1 on 1 evaluation with my daughter. It was scheduled for a few weeks later and I was terrified. I couldn't handle another repeat. I decided to take Lil Man with me this time, maybe to use as a diffuser for her. Ah, this screening was sooo much better. It was with the school psychologist and it was in her office. They just played. She had asked me to fill out a huge questionnaire all about Lil Lady and she talked with me a little here and there but she just got on the floor and played with my daughter. Night and day difference. She said that she would talk to the Special Ed board and set up a meeting with me. She was also going to send an Occupational Therapist to my house to meet with us.

The OT came to our house and brought a bag full of toys. He got down on the floor and played with Lil Lady and asked me some questions. He asked me about her triggers and what our day to day life was like. He recommended me to read a book called "The Out of Sync Child" and gave me some things to do. He told me to have Lil Lady swing daily, to do sensory play which was to expose her to every sense, every day during play, and to do high pressure massage.

I got on my computer after he left and requested the book from the library. I grinned when I found it and read the description. It was a book specially for children with Sensory Integration Dysfunction aka Sensory Processing Disorder (SPD). I was giddy. I was right with my own diagnosis! I was on the right track of learning how to help my daughter. I didn't need to go to a doctor to get an actual diagnosis. This was my daughter to a T and we were going to figure it out.

We met with the Special Ed board a while later and they gave me all the reports. In order to qualify for the special ed preschool (which we were trying to get her in) she had to be high risk in 2 separate areas. Unfortunately we didn't qualify. Little Lady was uber high risk in 1 area but because she is so smart and advanced intellectually she scored too high on everything else. I was devastated.

I decided then and there that since she didn't qualify, I had to learn everything I could to get her to figure out and cope with her SPD. Oh what a journey! We started doing daily sensory play. It was great. I bought a bunch of random sensory stuff to mix and change out and our journey to discovery began. I also started teaching her more about emotions and feelings and how to express herself. I made an effort to get her on the swing everyday, I tried to do more messy play with her, and I started to teach myself how to think like her. Oh how our life changed.

Let me give you a glimpse of Lil Lady pre-light bulb mommy moment. I actually wrote this next section on her screening paperwork:

She throws quite a few tantrums. She is getting quite a bit better since I have been working with her to learn emotions and manners. Her tantrums are usually triggered by sensory things and she is hysterical for usually at least half an hour. It often gets so bad that she pukes which then sets her off again because she gets dirty. She will bite her hand if she is mad, yell, scream, kick, slam doors against walls over and over again, and usually it has to run its course before you can get her to calm down. I was successful once videoing her throwing the fit and then I sat down next to her while she was still screaming and started watching the video and that made her stop and she was very concerned about "Lil Lady screaming" on the video so we were able to talk about it then.

My friend described Lil Lady really well when she said she is intense. She does everything intensely. She is intensely happy one second then intensely angry the next, she is intensely social, then shy. We are working on helping her learn her emotions and that seems to be helping with minor things but not during tantrums.

For the sensory items...she is overly sensitive to quite a lot of things. This is the area we are most concerned with.

Sound: she can hear very faded distant things and they seem to bother her. She can hear sirens well before I can and she covers her ears and yells "Sirens, so loud!" When my husband and I are talking and she wants it to be quiet she will yell "Be quiet! Shhh!" and gets mad if we keep talking.

Sight: the biggest issue here is sunlight, especially in the car. If it is bright she will start screaming at the sun to go away and freak out that it is hurting her eyes and will often cover her entire head with a blanket.

Taste: she is super finicky while eating. She is picky to taste, texture, and size. If it is something she doesn't like the feel of she will often spit it out and will make herself puke if we try to coax her to just eat it. She doesn't like to feed herself but can. She likes to have all of her bites broken up into tiny pieces and refuses to eat them otherwise. She hates trying new things and mealtime is often a battle.

Touch: She is overly sensitive to a lot of things here. Just this month she walked on sand for the first time without tears. It still makes her nervous though. She hates snow, tight clothing, uneven ground, and walking in puddles. She hates to be dirty and demands to get cleaned up instantly if she gets anything on her. She loves to stay clean and would rather watch kids at a park then go play and get dirty. She also tends to run into things and yell at them (walls, chairs, doors). I've worked with her in this area quite a bit so now she will run into something and now say sorry to it instead of yelling at it.

She is extremely intelligent so we are trying to help her learn appropriate skills while she is happy and having fun so that when she does try to freak out we can remind her of what she's been learning. She has improved drastically in the last 6 months since I've noticed her triggers and starting working with her but I feel there is more we can do to help her. Songs such as "If you're happy and you know it" or "If you chance to meet a frown" seem to help her remember to be happy but don't work once something sets her off.

Those things listed above were just some of the big triggers we were dealing with. A regular day would have at least 3 20 minute or longer temper tantrums. Sometimes up to 5-6 hours of my day would be of her throwing fits. Not a normal fit either, dangerous fits. She became violent and completely irate.

Now, I can honestly say, she is a completely different kid. That survey was submitted March 12, 2012. Oh what a difference one year has made. She now enjoys things and isn't fearful of them. She enjoys play. She enjoys learning. She enjoys life! It has been a miracle watching her transformation. She has learned how to understand and comprehend her world. Yes, every day is still a learning curve for us. But, we both have the knowledge and tools to know how to handle the situations as they arise. Yes, she still freaks out over silly (to us) things. But to her they are very real stressors. We can now go to parties and outings because we know we can actually enjoy them whereas before it wasn't worth dealing with the repercussions of our daughters sensory overload. She still is timid and shy around new people, and I still tell people to treat her like a cat. Let her come to you and acknowledge you first, don't make first contact and when she's ready she will open up. It's true. My daughter acts like a cat. It's great being able to walk through a store and have her calmly talk to me, instead of scream through every isle. It's great seeing her smile as she plays with friends instead of sit on my lap watching because she is too scared.

We've made so much progress. It's unbelievable. Only those closest to Little Lady have seen this transformation and its remarkable. She truly is a remarkable child with so much strength and goodness, now that we know how to channel it. I look back on those first 3 years and think how much easier my life would have been had I only learned of SPD earlier. Really, day 1 of getting her bathed in the hospital was a big cue that she had a sensory issue.

The thing about SPD is that it is a hidden disorder. No one knows the struggles they go through with every waking moment. It's not like other diseases, it is a hidden internal battle that they go through with every single string of sensory information that gets processed. Every tiny, little thing can set her off without any explanation and all you can do is hang on for dear life. I've learned a lot but I still have a lot more to learn. I think SPD is a lot more common than people are aware. I'm hoping that by posting this, more people will be aware of it and a little more kid to children (and their parents!) when the child doesn't act or think or do as most children would do. Now when I see mothers in stores with a child who is freaking out, I smile, walk up to them and say "good job mom, you can do it!" Or when I am around a friend with a child throwing a fit, I go up and offer to take over for a while. It is draining to be screamed at all day and I understand how rejuvenating a 5 minute break can be. Or when a child is just being "different" I smile, because I know that they have their own internal battle that they are fighting and just want someone to love them.

This journey has been a great learning experience and a humbling one too. I didn't just have to eat a slice of humble pie, I had the entire pie thrown in my face. But I am grateful for it. I am a better mother now because of it. I am a better listener, a better friend, and I have empathy for other struggling mothers with difficult children that they just can't figure out what to do to help their child. It is awful feeling so helpless as a mother.

Things I've learned:
We know more than we give ourselves credit for
Our Heavenly Father knows it all, and wants to help us
We need to stop thinking as adults, and think as children
We need to get down on the floor and play more
We need to trust our own abilities
A mother knows her child best
Sometimes you just have to cry and cry
I most likely have SPD myself, but have learned how to deal with it and so can others
Every day won't be as bad as the day you're having
A child knows what they need, they just need you to listen
Every child has strengths and weaknesses
I learn new things every day

If anyone reading this has questions, please feel free to ask. I wish I would have asked more questions earlier on. If I can help even one mom with her child than my job in posting this is done. We really need to learn to rally together as family and friends to raise our children, they are all so unique and individual. No two are alike and the more help we get from each other rather than judging each other how better off we will all be! We really are all just doing the best we know how.