This is a letter I wrote to our extended family members in October of 2011, just to ask for understanding, prayer, and to explain a little about what we were dealing with for Caleb. This was at the beginning of our journey with Sensory Processing Disorder, which eventually led us to understand that these sensory issues were contributing to his high level of anxiety as well. Perhaps it may help another SPD Parent to try and explain to their family what is going on with their child too. We are all in this learning together! And let me say, I received the nicest, most compassionate emails back from our family members, with an increased desire to understand more and support us more in our journey with our son. I know we are blessed to have such a supportive family. We are not experts on SPD, just parents learning as we go. Please see a licensed professional to learn the best ways to help your SPD child.
I know I can email you all to ask you to pray for Scott and I and our parenting wisdom. My heart is so heavy tonight, and has been for so long. We are particularly struggling with parenting Caleb right now. I think I have shared with some of you that things have been particularly hard at home since Caleb has started all day kindergarten this year, so for the past 2 1/2 months we have been trying to figure out ways to help him, as well as ways to help us to deal with him. The more I am learning about Sensory Processing Disorder, the more I am convinced that Caleb has some characteristics of this disorder, and perhaps the things that we previously thought he is willingly being disobedient or difficult about, may not necessarily be the case.
I have always known from the time that Caleb was first born, that he was different and more of a challenging baby . . . screaming for no reason, even after just being fed, diaper changed, nap completed. Everyone looks to a child's mother to know what is wrong and what will comfort them, and most of the time, I don't or haven't ever had the answer for Caleb. He was always reluctant to be cuddled, hugged, still is at times . . . there are so many things that point to him having a sensitivity with many of his senses. He often gets overstimulated and overwhelmed in crowded, busy restaurants, stores, and has from a young age as well. Only after 5 years of taking him to church, did he just now this year stop crying (most of the time, still sometimes does) when we drop him off at Sunday School, because crowded, social situations overwhelm him and make him very anxious. He is distressed about wearing shirts with collars and buttons, and has a hard time wearing long sleeves and jackets every year when the seasons change to colder weather. Since the start of all day school, we are noticing that after holding himself together all day by making sure he follows all the rules and does all the right things, when he comes home, it is his "safe place" as it should be, but where he lets it all out, and has the most severe meltdowns, and can't deal with anything logically.
I too, get very frustrated and upset with him when he acts out with his behavior and doesn't respond to traditional discipline methods. What works for one child, doesn't always work for another, despite our constant effort as parents to treat our children as equally and fair as possible. But we are learning that if he does in fact have SPD, we can't deal with him in the same way that we can another child who can process things in an organized way neurologically. If you are interested in reading or learning more about SPD, you can go to the following links.
http://sensorysmarts.com/signs_of_spd.html
http://www.sensory-processing-disorder.com/
What is often thought of just a "discipline problem" or "problem child" is not the case, and SPD is a real thing. These children cannot process in their brains and make sense of all that is going on in their environments, without help to learn how to do so, and therefore act out and behave in inappropriate ways when they have become sensory overloaded. I have been working to discover what sensory activities I can do with Caleb to help him balance out his sensory output/input throughout the day, so that he isn't so overwhelmed and it doesn't result in as many meltdowns, but what works one day, doesn't always work the next, and it is a trial and error type of thing. It is such a hard thing, and I feel so bad for Caleb, because I know that he desires so much to be a good boy and to behave well in his actions, for he tells me these things when he is calmed down and can think clearly. But so often, when he is overloaded, he cannot think clearly, and makes bad choices and exhibits very bad behavior as a result. He has such a low self-esteem of himself, and often feels that he can't do anything well. He says often that he is "the baddest boy in the world," or the "most horrible boy". It breaks my heart and is hard to hear these feelings coming from only a 5 year old kid, but it is a real feeling he feels and believes about himself, despite our encouragement that he is a good boy, but just sometimes makes bad choices. It is hard for him to differentiate between the two.
We are also having an initial appointment with some behavioral and developmental pediatricians to see if there is need to have further testing done to evaluate Caleb and the issues that he struggles with. Many children with SPD also are on the autism spectrum disorder scale to some degree, sometimes a high functioning form, called aspergers, in which there is difficulty or inappropriateness in social situations. There is a long waiting list though, and it may be 6 - 7 months before Caleb himself can even be seen. So, we are seeking out ways ourselves to help him, with what we know as his parents about him, and what we are researching about SPD.
Whether he receives an official diagnosis or not, we believe he needs a different kind of understanding than some kids do, and as his family, we appreciate any understanding you can give him and us as we figure out ways to help him process and deal with the issues he is struggling with. When he is appearing to be "acting out" and "misbehaving" we may respond differently than you expect, or differently than we have in the past, and that is because we are trying to learn to parent him with a different kind of understanding and knowledge. The things we have been doing for years with him . . . spankings, time outs, privileges taken away, don't seem to teach him or make things better for him or his behavior, and the point of disciplining is to teach the child to learn the correct way to behave and to behave differently the next time. So, we are searching for what those methods are that will work for Caleb. While we know that he must learn there are consequences for his actions, we may implement those consequences at a different time than we have previously in the past. So, it may appear that we are not giving him a consequence for his behavior at the moment, and that very well may be the case. Because our focus in that particular moment of his meltdown may be to get him redirected and calmed down, so that he can think clearly. Then later, in a calm, controlled state, we may discuss with him what the consequences are for his earlier unacceptable behavior.
So, I thank you all for reading my email, and appreciate your prayers for us as we continue to learn how to love Caleb for who he is, and for the child that God gave us to parent. We love all of our children, but obviously some children are easier to parent than others. But God doesn't give us more than we can handle, or so His Word states, so I am clinging to that promise. Scott and I are not perfect, but we are doing our best. Thank you, as our families, for all of your support and help that you give us in being a part of our our children's lives as well.
We love you all!
No comments :
Post a Comment