This is a series to learn about different moms and their different situations. Through interviewing these women and sharing their stories I hope that we can all have a better understanding and appreciation of each other. Hopefully we can support and encourage her “in her corner.”
Who She Is…
She is a working mom of one child who has been diagnosed with Sensory Processing Disorder. Her work schedule as a pilot is consistent in the fact that it is never consistent. Some weeks she is only gone one night, other weeks she is away for multiple days. She loves to cook, and to be on the go, but has had to sacrifice these parts of herself in order to care for her son, who is in kindergarten.
She explains her son’s condition as not being able to process information the way other people do. His body takes in and receives all information all the time. He isn’t able to filter out information that is not necessary. He sees everything, feels everything, hears everything, and his body sometimes can’t handle all that it is processing. He is constantly bouncing between being over-stimulated and under-stimulated.
He takes everything she says very literally, so she has to be very careful how she talks to him, and to be very specific. She has learned to avoid certain situations so that he does not become over-stimulated and experience a complete meltdown.
“Target is the worst place ever. All the lights would send him on overdrive. It was too much, he couldn’t handle it.”
The first clue that there was a problem was shortly after birth. He was born at a normal weight, but was having difficulty nursing and lost a considerable amount of weight that took him a month to regain. She began to supplement with formula, but he was still not growing at the rate the doctors hoped to see. It took several tries to find a formula that he would accept, and she found that it had to be at a certain temperature. By nine months he had begun some solid foods but it wasn’t enough to gain weight. From 9-12 month he did not gain any weight at all. They then began to investigate if he was failure to thrive, or if his body was just not able to process calories. She was becoming desperate, even resorting to feeding him ice cream just so he would eat something.
“It was hard, that whole first year. I was a new mom, everybody is telling me that babies will cry when they want to eat, but my baby didn’t cry for food, so we put him on a schedule, and even still he wasn’t into food.”
Their doctor was able to get them in with an Occupational Therapist and that was when they got the diagnosis. They were finally able to put together all the pieces. Looking back they were able to see that he had this from birth. Currently, eating is still a struggle. They only have a few foods that he will accept. They may gain an item, but then lose another.
Physically, he struggles to know where his body is in space. This means he needs a lot of physical pressure and heavy work. He is often bumping or pushing into other people, which usually ends up being her.
Going into kindergarten, he was not (and still not completely) potty trained. By the second week of school she noticed that he was wet when she went to pick him up. They have gone to see more specialists, and are thankfully getting close to resolution. His body cannot always process the sense of needing to go. Once he does feel the urge there is not always enough notice to get to the toilet in time. He wants to be able to control it but can’t.
“At one point things were going so well. We had been 3 weeks with no accidents! And then we had 5 accidents in a row. I had to pick that weight back up, and manage it again. I’ve been managing the potty every day for 4 years.”
He is gradually learning his body. He is beginning to be able to know and give his body what it needs. This could include quiet alone time, listening to music, or jumping on the trampoline.
What her days look like…
Because of her work schedule, it is difficult to have consistency in their family schedule, and they have to be flexible. It would be easier if they could be more consistent, but that is not an option, so they try to consistent in the areas that they can be. This means her husband puts their son to bed at night even if she is home since there are many nights that she is away.
She has to manage everything. Even though her schedule is the inconsistent one, she is the one that drives the consistency that he requires. She is constantly managing his nutritional intake, whether or not he needs to use the restroom, and making sure his schedule is not over-stimulating him.
It was difficult to find the school that was the right fit for him. First, they wanted to send him to a small school, but it had too many transitions throughout the day which included having to walk outside between buildings. In this situation he would have had to process a change in temperature, a change in environment, and a change in smells. The school they settled on is actually a very sterile environment. Most people would think it was boring, but it works for him so that he is able to focus. They knew he needed an environment with as few distractions as possible.
His school has been wonderfully supportive and willing to work with him. Sometimes he needs to stand to do his work, or carry a heavy backpack to the office. The teacher has given him permission that he doesn’t need to raise his hand and ask for permission to go use the restroom. During rest time he is allowed to spend time in restroom.
“When you have a child with special needs, you can be overly hard on yourself. You think you should be doing more, or you are a bad parent because your child is not excelling in some of the basic things, like going to the potty!”
What her strengths are…
She is thankful that organization and structure come naturally to her, since this is vital to his success.
What she struggles with…
When he was younger she often felt judged by others because of her son’s behavior and has even lost friends because of it. Sometimes he comes across as rude, or will throw a tantrum in public. It’s difficult because you can’t actually see that there is anything wrong. If people really knew what he was having to do to function everyday, they would probably be amazed.
She wishes she was able to read his brain. It seems that his rules are constantly changing in his world, and he gets angry with her when she doesn’t do something the way he wants it to be done.
“He wanted his sandwich cut a certain direction, but I cut a different direction, and he had a meltdown. He can lose it over something so little.”
She struggles with all that she has had to sacrifice in order to keep him from becoming over-stimulated. She misses being able to just go and do and be social. She struggles with how little he eats and that it is not as healthy as it should be. She struggles with knowing how to discipline him, trying to distinguish between the condition and just plain old bad behavior.
What her fears are…
It’s difficult to watch your child be different. She wonders if he is going to be an outcast, or an outsider. She wants him to be accepted socially. She wants him to have good friends that accept him for who he is.
She also fears that her son is going to grow up with a mother that constantly says, “Stop touching me.” And wonders how that will affect him.
“He’s not coming up and giving me hugs. He is hitting me or running into me, or crashing into me. I’m in a state of fight all day long.”
What her joys are…
She loves watching his mind work and seeing how he processes things. He can get fixated on certain things, but then he ends up knowing a lot about a particular topic. When he is enjoying something, there is nothing brighter.
He can also be very adventurous. He loves going places. He just may not participate when they get there.
What she does to stay sane…
“I run!”
She makes sure that she takes time to recharge and makes time to spend with friends without her son being there. She leans on her husband to take over when she is at her max. And going to work helps her stay sane too.
What she wants you to know…
She wishes people understood that there is not an easy fix. She feels like people think that she has all of this made up in her head or that he will simply grow out of it. She wants people to see that he is an amazing kid that just thinks differently. She doesn’t want him to be judged because it’s not something he can control. She wants others to understand that we are all dealing with something and we are all unique.
She doesn’t want to be seen as a bad parent.
“I’m struggling just like everyone else to handle whatever life brings.”
She wishes people would be more accepting of people for who they are. Support other moms, who might be struggling, by telling them that they are doing a good job and are an awesome parent.
And finally, ask questions, don’t give advice.
“People would tell me just put the food in front of him, and that he’ll eat it if he’s hungry enough. No, no he won’t. He’ll starve himself and go to the hospital, but thanks for the advice anyway.”
Oh mommas! We never really know what others are dealing with. Let’s encourage one another, support one another, and love one another. Hang in there momma, you got this!
I learned so much from listening to this momma’s story. Let’s spread the encouragement by sharing her story with others.
Are you a momma that needs encouragement? Do you know someone that needs someone in her corner? I would love to meet her! Please feel free to contact me and we can chat.
xoxo
