When my son was first diagnosed with SPD I borrowed a bunch of books from the library. I returned all of them, except for one that seemed to disappear like a puff of smoke. I continued searching our home for the book, but a year later we decided to go ahead and pay the library for the book. The very next day I found the book. I laughed, obviously it was meant to stay with us.
I pulled the book, Parenting a Child with Sensory Processing Disorder:A Family Guide to Understanding and Supporting Your Sensory-Sensitive Child by Christopher R. Auer, with Susan L. Blumberg off my shelf after reading a great post by Sarah at cheeriosmilkandspoon about how important it is to have family-centered care. I grabbed the book and headed into my room and started to read to my husband, a tradition that we started a while back. After reading the introduction we decided that we would continue to read the book together and work on the personal reflections on our own. I would hope that my husband would share his reflections, however he struggles with sharing his feelings and hates writing things down. We’ll see how things go on that front.
I began to read and we had to pause after reading this paragraph:
Leadership and inspirational programs teach that we go toward our focus. Our focus creates a self-fulfilling prophecy. If we focus on problems with our family, our children, or our spouses, these problems become greater. However, if we focus on solutions and strengths, these elements become stronger.
Earlier that afternoon I had become angry with Chase for one of his antics. He thought it was uproariously hilarious. I, not so much. I exploded, and after the explosion felt immediately sorry for yelling at my son. My husband soothed my son, and then told me “keep moving forward”. So often when I fail as the perfect mother (okay, that is everyday) I focus on those problems. Every so often I will think of a solution, but not very often. I need to remember what my husband said, as he quoted Walt Disney. I need to keep moving forward. I need to change my focus!
I find it ironic that the author of the book said to change the focus, but in the first personal reflection has the reader thinking about the challenges that we face to be effective parents. They ask “What challenges does your child bring to your family?” After we think about the issues that have been difficult the author has the reader reflect on what we have gained from our child. At first I felt that he was having us focus on the negative, but in reality he wanted us to focus on how we have changed because of the positive experiences our child has brought into our lives.
Challenges To Effective Parenting:
So often our oldest child feels that things are unfair, and that we treat Chase differently than we do him. It has been hard trying to help an eleven year old that life is sometimes unfair. Dee isn’t the only one affected by this rivalry. I mean, just today Emma was sitting on my lap. Chase decided he wanted the side she was on. He crawled up and muscled his way there. It didn’t matter that I had another leg to sit on, he wanted hers. And she didn’t want the other leg either. I stood up, and neither got my lap. (Sometimes my lap is more theirs then it is mine).
My personal goal that I have been working on includes organization, and here is one of the reasons why. Our life has become a huge rush from doctors appointments, therapy sessions, school, church, and just our daily to do list. Sometimes we find there are no moments in which we have to breath and take the moments as they come.
We struggle every day with our finances. Figuring out how to budget for the gas for traveling, medicine, dietary restrictions, and paying bills is a constant struggle, that is just for me! Add in our kiddos and wow – it boggles the mind.
Lack of Support
I could write a novel about this one. Chase has a great IEP team at school, and we are constantly working on improving what he needs, but there isn’t money in the school budget for the true support our kiddo needs. My husband and I get to leave the house for 1-2 hours each month while we receive respite care from our ABA specialist. I miss not being able to go to the movies, or eat a nice leisurely meal. It is difficult not having family close by that knows how to deal with Chase and his idiosyncrasies, and finding someone who feels comfortable watching him is difficult, okay, downright impossible.
Physical, Spiritual, and Emotional Needs
So much of our life revolves around our children’s physical, spiritual and emotional needs. My house is in constant need. Chase is like a living, breathing cyclone. If you turn your back on a clean room when you turn around it is no longer neat and tidy. Every day is a new series of likes and dislikes – with the resulting tantrums and meltdowns that come with these new likes and dislikes. Each day is a struggle to figure out best how to help him. Oh, and don’t forget his sensory needs, but that will be a post in and of itself. His needs change from one moment to another, I often feel like I am in the longest ping pong match ever!
From Challenges Comes the Blessings
Sibling rivalry is something that has been around since the beginning of time – I mean look at Cain and Abel. Although the rivalry is difficult to deal with at times, on the other hand it has been that rivalry that has heralded great changes in our lives. When our youngest began to do things Chase wanted to be right there with her, and many of the things that he struggled to accomplish he started doing, because Emma was doing it.
Through rising to the challenge I am learning how to be a fair and just mediator between the children, not only that but I am teaching them how to compromise with one another. They fight, on a daily basis, but they love each other too.
The other thing that I have learned and started to implement is becoming aware of when Dee and Emma are feeling a little put out. It is those times that instead of telling them “life isn’t fair” I find a way to give them a little more extra of something – whether it be time alone with their father, or snuggle time with me while Chase is swinging in his hammock. I am learning how to meet individual needs.
Being Chase’s mother has taught me the importance of prioritizing and has led me to my own personal goal setting of becoming organized. The changes that I have implemented have all started from what Chase needed, and recognizing that everyone else in my family needed it too.
Interestingly enough, although leaving my job made life more difficult for our finances it has provided me with extra time with my children. I have been able to focus on building a stronger foundation for my son, which has a trickle down affect on my other children.
Although I no longer work, I am looking at alternative ways to provide for the family. The economic hardship has us looking in areas of the country that we never would have otherwise. We have a plan to improve our finances, and it has brought a new-found sense of partnership between myself and my husband.
Teaching Chase self-advocacy is a high priority on my list. In order to teach him self-advocacy I need to implement it myself. I have learned to not be afraid to ask for help. I have found reading blogs about other families like mine has gained insight into my own child, and has added such a degree of comfort. I have learned to reach out, to family, friends, and sometimes a therapist. Having someone who doesn’t have a vested interest in my life is a wonderful sounding board.
Through reading different books, blogs, articles I have learned how to meet some of the immediate needs. I continue to learn, and develop strategies to help Chase not only grow but flourish in his environment. I have learned how to make a weighted blankets, find the right temperature for bath water, and pull back on my anxiety when there is a puddle in the road because no matter what I say he is GOING to jump right into it, then do some more jumping just for the heck of it.
I guess what I am taking away from thinking about the challenges is that being Chase’s mother has changed me. It has made me think outside the box, become comfortable coloring outside the lines, relax and not be such a smother mother (okay, I still am a smother mother), be a little less selfish. I am grateful for the challenges in my life, for they make me stronger.