Pain, patience and perseverance, living with SPD
Tonight I was walking Anna in her stroller around the neighborhood. I started thinking how nice it was to have this time and how long it took us to get here. Most people are probably thinking, walking is normal...while others might be thinking, how lucky I am. But I don't think luck had much to do with it and this was not normal or easy at all. Anna's first summer she just cried, a lot. I think screamed would be a better word. She was so unhappy with everything. The way things felt, the sounds, the lightness, the smells...I just didn't know it or how to help her get through it. I didn't understand that she had sensory processing disorder, no one told me.
The next spring I wanted to be able to walk her in a stroller, but whenever we attempted it she would get so upset and try so hard to get out. She would cry and fuss, it just wasn't a good experience for her. She would get completely stressed out. When her first birthday came, I had a plan...a goal. Instead of a stroller, I found a trike that I could push so she could see all around her, she could even see behind her and me. Now, to start...it wasn't easy. The first walks were very short, she would still get upset, but it was tolerable. This was all because of her anxiety and she was on high alert, it was actually painful for her, an irrational fear she was trying to conquer. Together, with her daddy, we helped her to enjoy walks. Unfortunately she would not wear a hat, any type and she was still practically bald so on really hot days we tried to avoid the walks and always had to cover her head with sunscreen. So, became my next goal...Anna will wear a hat.
As the fall approached that year, she was 18 months old. With winter coming I wanted her to wear a hat, still light on hair and not the best immune system I felt it was necessary. I got a crate and filled it with hats, all kinds. We had knit hats, sun hats, fireman hats, and baseball hats among the pile. We would all wear hats, as a game. Family came over, they wore hats too. Still she wouldn't keep it on except for a few seconds. I saw how excited she would get when we were going bye bye, and started to put a hat on her just long enough to get to the car. She would take it off, I would put it right back on. As she started to comprehend language I explained to her that the hat goes on until she's in the car, and she started allowing the hat for just that period of time. Eventually she would forget that the hat was still on her head in the car.
As spring started to warm up the days, my next goal was a hat for the sun and for the walks in her trike. She did not like that idea at all. I would put the hat on, walk a few steps and she would throw it off. So I would stop. Put the hat back on, a few more steps and off it flew. That first 20 minute walk probably took an hour. Eventually the walks got better and stops got less. I would not continue until her hat was on. It wasn't the first time, the tenth time, even fiftieth time...it might have been over a hundred times...but whatever the number didn't really matter to me, it was to teach her and for her to learn a new skill. She will now walk an hour with her hat on. I was patient and I persevered.
As I was walking I was also feeling the pain, the pain of my own this time, not hers...my ankles that love to give out and shoot pain whenever they feel like it, my back that twinges just so when I push up the hills, my body that thinks I'm insane since it is getting older now and out of shape, and my hands with thumbs that are becoming dislocated due to arthritis. All of this, yet I am patient and I will persevere, because Anna needs me to do so. She needs me not to give up because its too hard for me, she needs me to help her to learn and be comfortable in the world around her. She needs me...everyday, and God willing I will be there for her.
Tonight I was walking Anna in her stroller around the neighborhood. I started thinking how nice it was to have this time and how long it took us to get here. Most people are probably thinking, walking is normal...while others might be thinking, how lucky I am. But I don't think luck had much to do with it and this was not normal or easy at all. Anna's first summer she just cried, a lot. I think screamed would be a better word. She was so unhappy with everything. The way things felt, the sounds, the lightness, the smells...I just didn't know it or how to help her get through it. I didn't understand that she had sensory processing disorder, no one told me.
The next spring I wanted to be able to walk her in a stroller, but whenever we attempted it she would get so upset and try so hard to get out. She would cry and fuss, it just wasn't a good experience for her. She would get completely stressed out. When her first birthday came, I had a plan...a goal. Instead of a stroller, I found a trike that I could push so she could see all around her, she could even see behind her and me. Now, to start...it wasn't easy. The first walks were very short, she would still get upset, but it was tolerable. This was all because of her anxiety and she was on high alert, it was actually painful for her, an irrational fear she was trying to conquer. Together, with her daddy, we helped her to enjoy walks. Unfortunately she would not wear a hat, any type and she was still practically bald so on really hot days we tried to avoid the walks and always had to cover her head with sunscreen. So, became my next goal...Anna will wear a hat.
As the fall approached that year, she was 18 months old. With winter coming I wanted her to wear a hat, still light on hair and not the best immune system I felt it was necessary. I got a crate and filled it with hats, all kinds. We had knit hats, sun hats, fireman hats, and baseball hats among the pile. We would all wear hats, as a game. Family came over, they wore hats too. Still she wouldn't keep it on except for a few seconds. I saw how excited she would get when we were going bye bye, and started to put a hat on her just long enough to get to the car. She would take it off, I would put it right back on. As she started to comprehend language I explained to her that the hat goes on until she's in the car, and she started allowing the hat for just that period of time. Eventually she would forget that the hat was still on her head in the car.
As spring started to warm up the days, my next goal was a hat for the sun and for the walks in her trike. She did not like that idea at all. I would put the hat on, walk a few steps and she would throw it off. So I would stop. Put the hat back on, a few more steps and off it flew. That first 20 minute walk probably took an hour. Eventually the walks got better and stops got less. I would not continue until her hat was on. It wasn't the first time, the tenth time, even fiftieth time...it might have been over a hundred times...but whatever the number didn't really matter to me, it was to teach her and for her to learn a new skill. She will now walk an hour with her hat on. I was patient and I persevered.
As I was walking I was also feeling the pain, the pain of my own this time, not hers...my ankles that love to give out and shoot pain whenever they feel like it, my back that twinges just so when I push up the hills, my body that thinks I'm insane since it is getting older now and out of shape, and my hands with thumbs that are becoming dislocated due to arthritis. All of this, yet I am patient and I will persevere, because Anna needs me to do so. She needs me not to give up because its too hard for me, she needs me to help her to learn and be comfortable in the world around her. She needs me...everyday, and God willing I will be there for her.