Today instead of talking photography I am going to talk about something near and dear to my heart. I read an article on Facebook today that made me feel as though I was not alone but after reading the comments from others it made me mad. The article I am talking about is the one with pictures of kids that say things such as; Hi my name is Molly and I only eat green beans if my mom picks out all the seeds. There are about 30 of these little images with similar sayings. To most people these things seem ridiculous but to families who struggle with certain disorders such as Autism, OCD, Asperger’s, and Sensory Processing Disorder these things are real. Quirky eating is just the tip of the iceberg and I hope to shed some light on this and other struggles families go through every day. I hope to give other families peace of mind knowing they are not alone. I also want people to stop and think before they judge which is easier said than done.
Why I Care
My daughter has been diagnosed with Sensory Processing Disorder, ADD, and Anxiety. Most of you know about ADD and Anxiety so I am not going to talk much about that but a lot of people don’t know much about Sensory Processing Disorder (SPD).
What Is It?
In easy to understand words SPD is a neurological disorder where the brain over re-acts to certain input from the senses. For example, when my daughter gets dressed her clothes may feel like 50 grit sandpaper on her skin or it may feel like a million ants crawling all over her body. When she drinks pop it feels like a ton of tiny firecrackers exploding in her mouth (this one I am ok with). When she goes to a store or a restaurant her brain can’t block out all the small noises that ours can so it is very noisy in her head. She can smell things that I can’t. For example if we are in the car and there is a skunk a mile up the road she asks me what the smell is. I tell her nothing but for her it is clearly not nothing and soon I can smell it too. This example doesn’t seem like it matters but by the time I can actually smell it, the scent for her is overwhelming.
How This Effects Our Life
How doesn’t it would be the better question? From the time she wakes up in the morning until the time she goes to bed I feel as though I am walking on eggshells. I never know what is going to set her off. As time goes by and we become more educated on this subject we have learned more about her triggers and can try to either avoid them or prepare her for what’s going to happen so she’s not blind-sided with it. We have also enlisted the help of professionals. We go to a counselor, developmental pediatrician, and an occupational therapist. They give us support and ideas of things we can do to help her.
A “Normal” Day in Our Home
It is Saturday morning and Jaylin has been excited all week to go to the movies today. She wakes up happy and excited. She talks about going to the movie, getting popcorn, and a snack. She eats breakfast which today consists of oatmeal. Not just any oatmeal, Daddy’s Oatmeal. What is Daddy’s Oatmeal you ask? It is a careful combination of plain oatmeal, brown sugar, maple syrup, and cinnamon. Now if this oatmeal is too dark, too light, too thick, or too watery it will not be eaten. Not only will it not be eaten but it will send her into a fit which will include her running to her room crying, tearing all the bedding off the bed and thrown into the hall, ripping all the books off her shelf, taking everything off the walls and onto the floor. But today we are lucky because mom has become an expert of making the perfect oatmeal. Sigh…first catastrophe of the day avoided. Jaylin is encouraged to play, climb, and bounce while the rest of the family is getting ready. Our therapist has educated us on the benefits of large muscle input and how this can help control sensory input and makes it less invasive. Yes she jumps on her bed and yes she is allowed to climb up the railing on the stairs, not because I can’t enforce rules but because I want her to get the input she needs. Now it’s the time of the day we all dread. It’s time for Jaylin to get dressed. No matter how much we prep her, no matter how many times I told her 20 minutes, 10 minutes, 5 minutes, no matter how much input she has had, it’s still going to be bad. How bad is the question? First, the underwear, which she explains to me as squeezing her. We get those on and she starts kicking and screaming. I wrap her tightly in her blanket and bounce and swing her until she settles down. Next the pants, which mind you can’t be just any pants. Don’t even think for a minute that I can just go to the store and buy my daughter cute little outfits and fun shoes…no, not even an option. Mostly she wears soft pants which include fleece, cotton leggings, and yoga pants. However, the fleece gets bally and so we can’t do those anymore. Ok, so the pants are on now by following the same method as the undies. Next, it’s time to put the shirt on. The shirt must be long sleeved, soft cotton, plain-no prints on the front, no little pockets, no frills, no lace, no anything. Try finding that in a store….when I find things I buy multiple sizes which ends up back firing on me because if she has a bad experience with one of those shirts she won’t wear it again and then I am stuck with things in bigger sizes she will not wear. Ok, the shirt is on now after more wrapping, bouncing, and swinging. Goodness, we still have socks, shoes, and a jacket. By this point I am physically exhausted and depending on my patience level for the day sometimes emotionally exhausted too. Most days we leave the house at this point and carry with the jacket, shoes, and socks. And no I don’t need anyone to tell me that it is negative 20 out, I am aware! My car is warm and she isn’t in danger. Now it’s time to ride in a car where she needs to have seatbelt on. On a good day the seatbelt isn’t too bad but on a bad day this seatbelt is strangling her in her mind. So a 20 minute car ride to town turns into an hour of stopping to wait for her to be able to get the belt on. Anytime we can have a quiet car ride and not one filled with kicking, screaming, and pounding on the back of my seat is amazing…ahh the little things in life! To have gotten this far is also considered a good day. I can’t even tell you how many times I have no fight in me to do this and I just stay home with Jayin while my husband brings our other daughter to do whatever it was we were going to do or we just all stay home. So we get to the theater and now she has to put on the socks and shoes. She can’t, she just can’t. She is trying, they go on and off, and on, and off, and thrown in the front. Finally it’s time to go in or we will miss the movie. The rest of us head in and she works up the courage to put them on, leave them on, and come in with us. Once she is in the theater she stops crying instantly-she’s smart-she knows people will look at her and know something is wrong if she is crying and she doesn’t want anyone to think anything is wrong or different with her. So we go the movie and she loves it. It seems as though she is in a better mood so we decide to go out for lunch. We pick somewhere new to try and she isn’t happy about it. She refuses to eat and sits there fuming the whole time. Again, because we are in public she holds it in but I can tell she is very agitated. I know what is coming when we get in the car. On the chance that she said it was ok to go to a restaurant I have to drill the waitress about what the food looks like. Are your chicken nuggets nuggets or tenders? Are the fries “normal” plain fries or do they have seasoning on them. The waitress looks at me like I am insane. We go ahead order the food and when it comes it doesn’t look right so she doesn’t eat it. This frustrates her because she is hungry and she wants to eat but she just can’t. So we go to the car and she lets it all out. This includes crying, kicking, getting out of her seatbelt, and much more. It makes for a long ride home for everyone.
As you can see every day is a struggle for her, for me, for my husband, and for the other kids living in our home. I have to say we have all developed a level of patience that I can’t even put into words. It becomes very hard when others don’t understand what we are going through and people tell us she is just being difficult and she is “playing” us. Really, how do you explain when she cries and tells me, “Mom, I am trying too hard, I just can’t do it.” When I asked what she was talking about and she responded with this, “Putting clothes on…I try so hard and I just can’t do it.” It kills me that something so simple can be such a struggle for her. For my daughter she doesn’t want to leave the house because she has to get dressed. Getting dressed causes her a lot of stress due to the above reasons. This leads to anxiety. This has created a viscous cycle. A cycle we are trying hard to break.
Getting her to school every day was a struggle. She hated going and it was getting harder and harder to send her. She fought us every step of the way. When we could get her there she wasn’t learning well either which didn’t make sense because she is a smart kid. When she wasn’t able to count and identify letters like she should be I started to think she had a learning disability too. I read an article about kids like her being so consumed by just trying to get through the day with all the sensory input they couldn’t pay attention to what was being taught. We made the hard decision to pull her out of her brick and mortar school and try virtual school. I was so nervous about doing this but I am so happy we did. She has learned so much and is now even if not ahead of where she should be academically. What is even better is she enjoys learning!
I sometimes cry when I think about wanting her to have a “normal” life. She is scared to death to ride a bike without training wheels. Kids with SPD have perception issues too. Specialists call this the sixth sense. When she tries to ride a bike, if there is a tree 20 feet away, she will freak out and she truly believes she is going to run into that tree. She can’t be on a T-Ball team because she wouldn’t be able to wear the glove or the T-Shirt like everyone else. She can’t go bowling because the shoes feel weird. It’s hard for her to wear a bathing suit because of how it feels. Some days she can’t go out to play because she can’t get her winter gear on. She can’t wear the cute clothes she wants to so going shopping isn’t fun for her. She can’t get her hair done because just brushing it is pure torture.
Embrace Their Strengths
Although many days go as described above we also have our share of AWESOME days. Jaylin is a fun-loving, caring, energetic, funny girl. She loves animals and camping. She is a caretaker whom will do anything to make anyone feel better. She loves playing with her cousins and being outside. When we have these good days we take advantage of them. Sometimes she will even try a new food!!! If you and your family are struggling with issues like this I urge you to stay strong and plug along even if you feel like you must give up. I believe that there will be a day when my daughter will be able to ride her bike, play sports, and enjoy a shopping trip with me! To those of you who are a close family member wondering what you can do to help, just listen. Believe that even if you don't see these behaviors they are happening. Support the child's parents with empathy and laughter.
I Dislike When People Judge
Back to the main reason that inspired me to write about this. I used to be so guilty of judging others. If I was out in public and I saw someone with kids in PJ’s or unruly hair I used to think to myself, come on; take a few minutes to make your kids look presentable. If adults were out and looked not how I thought they should look I said to myself, do you even own a mirror. Looking back I am embarrassed at the amount of judgment I passed onto others. However, now I get it! I guess wisdom does come with age and experience. There are probably parents out there that don’t do these things because they are lazy or maybe they just don’t care but how do I know what is going on in their life. How do I know if they are struggling with depression, anxiety, loss, domestic abuse, or a million other things? I DON’T and for this reason I have stopped judging people. I hope you will do the same!!!