Just need to blog . . . can't get to sleep

So, I'm not sure why I can't get to sleep, but I just thought that blogging might help me get all of these feelings/emotions out that I'm feeling.  I'm not particularly overwhelmed, worried, but yet I am.  Doesn't make sense. Sometimes you just need to write for yourself, not for anyone else.  So, I guess that is what I will do.  Already my thoughts are a jumbled mess, but they are my mess I guess! The past two weeks have been busy, fun filled, and overwhelming all at the same time.  We had a wonderful Christmas, enjoyed visits with my parents, Scott's parents, my sisters and their families, cousins, friends from college.  All really wonderful.  But being around people and going non-stop, although I enjoy being around people, I have learned that people drain me.  I need time to recover.  Time to myself to recharge.  Especially after a long two weeks of people.  I'm not quite sure when I will get that, but maybe that's why I'm up now blogging, reflecting . . . for myself to recover. The holidays were one of the best we had.  I feel like our older two boys seemed to grasp that Christmas really wasn't just about receiving, and getting, getting, getting . . . but that it was about thinking of others too.  Enjoying time with our family and friends.  And most importantly about worshiping Jesus for whom we celebrate.  I was very, very happy and proud at the way all 3 of my kids behaved all during the past two weeks.  They all adjusted very well to changed schedules, out of the ordinary people around all the time, sleeping away from home, and just being flexible when it was needed.  Being out of routine can be challenging for all of us, but it is particularly challenging for my son who deals with anxiety and sensory processing disorder.  He really didn't have any major melt-downs, or really any at all that I would consider a melt-down during the past two weeks.  That is such a HUGE accomplishment for him!  Holiday times, family gatherings, celebrations used to be such stress for my husband and I . . . worrying about when and how he would melt down.  What would set him off.  We knew it was coming, but just when.  And how would others around us react.  Most people don't understand.  How would we react?  Would we have enough energy to deal with him the way we knew we should or would we melt down ourselves in all the chaos?  This year, we didn't have that, and it was such a nice change.  Sure there were times when he could've melted down at any time, but he and us took steps to prevent it and gave him the time and space to regulate himself when needed.  We planned in breaks away from people, and were proactive as much as we could be. I want to say how proud I was of him last night too.  He and his brother and sister went to spend the night at my in-laws.  Everything was going fine until he got in trouble.  He was told he had to stop ichatting/texting on his ipod with a friend who had asked him to stop.  He didn't want to, and disobeyed and disrespected his grandparents when they told him to stop.  But instead of melting down, he talked to me on the phone and told me that he missed me and Scott and that he wanted to come home.  He said that he felt like he was going to cry if he didn't come home.  He SPOKE about his feelings and explained rather than melted down.  Yes, I know that he was in the wrong for disobeying and I'm sure the emotions of being angry that he got in trouble were what sparked him wanting to leave and come home.  But he talked it out instead of screaming!  I agreed to go get him, even though I know my husband did not want to at first. My husband felt like we were rewarding him for his misbehavior for coming and getting him.  But after talking through it with him, we agreed that he would receive his consequence for the behavior, and that us coming to get him was separate.  We were coming to get him because I believe he truly missed us and needed his mom and dad.  We needed to show him that we heard him speak his feelings and reward him for doing that, instead of having a melt-down screaming fit.  My husband and I were on the same page, and we went and got him.  He ended up going back to his grandparents house in the morning and did great.  I truly believe that while his misbehavior and the feelings of getting in trouble sparked him feeling bad and wanting to come home, I already saw his emotions building up for the past couple days.  After all, all of the craziness can put anyone's system out of whack, but especially someone with his particular sensory and anxiety related struggles.  So, that is that.  Now, one more day until the busy school schedule returns.  I'm not ready.  Still so much to be done around here, things to put away, clean, etc. from the holidays.  But ready or not, here it comes.  Better try to get some sleep!

A Letter To Your Family About Sensory Processing Disorder

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.

Hi family,

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!

Sensory Processing Disorder is Part of My Story

This is a blog post I shared on one of my other blogs, but I seem to have a wider audience at this blog, so I wanted to repost it here, in hopes that it may help another SPD parent.  (This was originally written in August 2012.)  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.

It's been a while since I've been actively studying SPD and how it affects Caleb, specifically. The developmental pediatricians we saw, diagnosed him with Clinical Anxiety Disorder. And even though they didn't specifically diagnose him with SPD, the first book she recommended for me to read was "The Out of Sync Child," by Carol Kranowitz (a book all about Sensory Processing Disorder). I had already read it. That's why at the time of our appointments, the doctor was so impressed with how much I already knew and how many suggestions that she gave to help him in the situations he often melts down in ,we were already doing. But despite all the "sensory diet" activities we were trying to fit into our daily routines, we were still having issues that didn't seem to be getting any easier or better, without a TON of work on our parts. We opted to try anti-anxiety/anti-depression medication, and truthfully it has helped. It's helped Caleb to feel better about himself, have more self confidence, be more outgoing in public situations and with people he doesn't know very well (interacting with his new teacher for instance by talking and carrying on conversations . . . this he wouldn't have done before until after months of getting comfortable with her). The medication has also helped Caleb to think more clearly and logically . . . that is once he is calmed down. And it has helped so that he calms down quicker when he does go into a "fight or flight" reaction when he is in sensory overload. It doesn't, however, completely eliminate the situations in which he can easily go into meltdown reaction. Also, we had increased his dosage because we saw some more of the panicking and anxiety reactions occurring more often again, and we and the doctors thought perhaps he needed a higher dose of the medication to help regulate him. However, when we went up from half a pill to a whole pill, he started going to the opposite end of the spectrum and being hyper, impulsive, couldn't sit still, etc. Over the course of the past several weeks we have decreased his dosage back down to half a pill, and it has helped some with the increased hyperactivity.

But the changes in all of this comes at a hard time anyway . . . the start back of school. New situations, new changes in routine, new people, new environments . . . these are the things that Caleb can have trouble with. And what I've recently learned in another book I've been reading about SPD, is that Caleb's sensory signal he seems to have the most issues with is called, "Self Regulation" and also "Proprioception." In this book I've been reading, "Understanding Your Child's Sensory Signals" by Angie Voss (Kindle edition 5.99), it kind of reads like a helpful handbook . . . when your child is having trouble with _____, then this is the sensory signal they're having trouble with, and here are some things you can do to help them during this time. Today, after a meltdown at homework time about Ethan finishing his reading before him and getting to go play with a friend before him, he was in his "fight" stage of crying and being so focused on the fact that he wouldn't get to play at the same time, that he couldn't reason that all he had to do was finish his reading and get focused on getting it done and then he would be able to play too. He couldn't get to that second logical thought though, so I took him in the bedroom, made him jump on the trampoline 30 times (all the while him crying, but slowed down as he jumped). I couldn't talk or reason with him during this time. The only thing I could say was that he needed to jump so that he would calm down, and that jumping would help him to calm down. I then tried creating a "Pillow Cave" for him, a suggestion from the same book.

-Pillow Cave - helped him go under my comforter and sheets and piled pillows up on top of him and around him, and told him he was in the "Pillow Mountain" to calm down. I told him he didn't need to think about anything else or talk about anything else right now. We would talk about it (whatever consequences or actions are needed) after he has calmed down. Once he has calmed down, you can usually then talk to him about his behavior and ask him questions about how he reacted and behaved, was that good behavior or bad behavior, what the consequence will be for the bad behavior, and what the plan is now to move on from this.

The Pillow Cave actually helped him to calm down a lot. And I was able to then logically talk him through the situation, talk about what his consequence was for not following directions and reading when he was supposed to (the consequences and responsibilities still get done, not excused), and then we came up with a plan together on how to move on from here.

It's a lot of extra time and work for me, in that during a meltdown of what appears to be him misbehaving, or disobeying (and sometimes he is with his actions), instead of focusing right then on the behavior and the meltdown, I have to focus on the fact that he is in sensory overload at this moment and my focus has to be to get him to calm down. Then, I can talk to him. It takes a lot of extra time and patience that I don't always think I have the time, strength, or energy to deal with. I find myself thinking, "Why can't he be just like a "normal" child that when I say he has to do his reading before he can go play with a friend, he may whine or complain a little, but then accepts in and gets the task done . . . instead of turning it into a huge meltdown?" I found myself forgetting on the first day of homework that the calming down part needed to be my focus, and so I lost it. I yelled at him, I took him to time out in his room (another thing that makes things worse for him and increases the severity of the meltdown), . . . I had a bad "Mom moment" for sure! I think I was partly hoping that with the success we had seen with his medication at the end of the school year last year and over the summer, that perhaps I wouldn't have to make these "sensory diet activities" a part of our regular routine. Who has time to do all these things anyway, with 2 other children, working part time, and trying to maintain a household I thought?

But I've done some soul searching and praying in the last few days and realized that just because he takes medication, it doesn't erase the issue he has with SPD. There are no medications for SPD, only accommodation and understanding. I am still going to have to make these accommodations, and stay on top of providing these sensory outlets for him so that the meltdowns WILL BE FEWER and so that he can continue learning things that help calm him down. One day, I pray he will be able to Self Regulate himself, but so far, only 7 months or so into really learning about this and how it affects him, and him only being 6 years old (almost), I can't expect him to be able to do that. My understanding and patience has to remain and be accepting of the issues he struggles with. It is so hard to not think in my mind that he is acting and behaving this way on purpose, just to make my life hard, or just to call attention to himself . . . but when he is in a calm state, I hear the true feelings and thoughts of his heart, and he doesn't want to react and act the way that he does. He doesn't want to feel out of control, overwhelmed, and acting badly.

So, it is with a new understanding (again) that I will try to face my routine each day with him . . . especially homework time. The hard thing is that the issues he struggles with for SPD don't affect him at school (well they do, but silently). He is not a discipline problem at school. It's like he flips a switch and retreats into a shell at school, being quiet, following all the rules, etc. So, why then do the meltdowns just occur at home? The developmental pediatrician says it is because that is where he feels the most comfortable, able to be himself, able to let out all the feelings he's stuffed in all day during the day at school, and then he lets them out in inappropriate ways at home.

So, some things we have found that help Caleb specifically are below. (See more ideas on pg. 32 of attached PDF book - "Your Essential Guide to Understanding Sensory Processing Disorder" by Angie Voss) It's kind of like we have to make him do a circuit workout of exercises to keep his brain in balance. And that's hard to remember to do. But I am going to try to be committed to doing these again on a regular basis, so that his nervous system and neurological system will be more balanced.

-Jumping up and down or on a trampoline at least 30 times

-Doing push ups (on ground, or on wall)

-Hanging from monkey bars (with adult assisting so he doesn't fall)

-Standing on his head (helping him to have his head inverted/upside down)

-Putting books in a backback and having him walk around with it through an obstacle course or up and down stairs (heavy work/lifting work)

-Using an exercise stretch band to put around his feet while sitting in the pike position with his legs out in front of him and pulling back and forth with his hands/arms

-Crab walks (heavy muscle movement)

Some other great resources and books I'd recommend on understanding Sensory Processing Disorder are below.

"Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues" by Lindsey Biel and Nancy Peske

"The Out of Sync Child" by Carol Kranowitz

If we do our best to understand why Caleb acts the way he does sometimes, and do our best to provide these sensory exercises and outlets, hopefully we will begin to see more improvement and less meltdowns and out of control behavior. It takes a lot in changing the way that we think about things, about traditional discipline methods, about shifting or stopping an activity that is not working or one in which Caleb is not handling well, and being willing to try making a "Pillow Mountain" with him, or suggesting he do 30 jumping jacks at a time that seems inopportune. But that's what we have to do sometimes . . . and I've found that when I take the time to do these things, it really does help.

It is still such a hard thing to deal with as a parent, but one of my friends encouraged me recently that perhaps I would be able to one day encourage another parent going through this with their child, and offer suggestions or ways to help them from what I am learning now. This is a part of my story as "Mom to Caleb" and I have to accept my role in this. I am continuing to pray for God's strength each day to learn more about SPD, and ways in which I can help my son.

Update on Caleb

Thank you to our friends and family who have been praying for Caleb and for us.  About 3 weeks ago, things were extremely bad with Caleb's anxiety and we ended up having an emergency appointment with the specialist doctors who have been seeing Caleb since last October.   We agreed that we really needed some extra help for him, since sensory things, and natural things we'd tried were not helping.  He has been taking a very small dose of anti-anxiety medication under close supervision of his doctors.  It is the best decision we have made for him with this situation!  Honestly, by the second day I could tell a difference in the way he was thinking about things.  It was like the things in his brain that were not formerly connecting, were now connecting and he was thinking so much more logically.  Meltdowns haven't stopped completely, but even if he starts to overreact to something, we generally can talk him back down to bring him out of it so much faster than before.  We notice that he is feeling better, and notices it in himself too.  It's so nice to see more of Caleb's fun, happy, quirky personality come out more and more.  Instead of only seeing a glimpse of him every once in a while, we are seeing his great personality regularly now.  It was definitely a hard decision to come to, but we had tried everything else.  It is not unlikely that his struggle is hereditary too.  But I am just so thankful for the positive results we are seeing.  It may not be something he has to take for the rest of his life, but for now, it is the right thing for him.  So, thank you to those of you who prayed for him and for us.  We have felt such a peace with our decision, and the entire mood of our household has been so much better.  Instead of feeling like everyone has to walk on eggshells around him 24/7 for fear of the awful meltdowns that would result for illogical reasons, we are enjoying each others company and living what I feel is a regular family routine.  It has it's ups and downs and nothing is perfect, but our whole focus isn't just on Caleb and how to get through the day with him.  So, thank you again for everyone's concern and for lifting us up in prayer!

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.

Prayers for Caleb

For any of my friends who have been following my posts on FaceBook lately, or over the past year really, you probably have noticed that I mention Caleb a lot, and praying for him, and issues he's having, and struggles I'm having.  I've talked in length and emailed in length (probably too much length sometimes :-) about what we've been going through with Caleb lately.  Some of you have asked me how you can specifically pray for Caleb and for us, so I thought about it a lot tonight.  There is much more explanation and details behind everything, which some of you have listened to and read (thank you again!) But here is the summary I came up with tonight to share.

Caleb struggles with extreme anxiety, which has been clinically diagnosed recently, and he responds inappropriately to that anxiety in ways such as tantrums, meltdowns, degrading self talk, etc. at home. His meltdowns and anxiety levels have increased significantly with the start of kindergarten this year, and more recently in the past couple weeks even.  He also is affected by SPD, Sensory Processing Disorder, which contributes to some of his anxiety issues.  The things we need the most prayers for are:

1) For Caleb to learn and remember how to respond to his feelings in more appropriate ways, other than melt-downs, such as self-calming exercises, sensory activities, etc.
2) For Caleb to believe in himself and listen to the “voice of truth,” which is Jesus, who tells him that He is important and special just for who he is, not for what he does or does not do.
3) For Scott and I to have patience, understanding, and strength to parent Caleb in the best way possible for him, and to not grow weary in the daily, sometimes hourly, struggles we face with him. And for us to have hope that things will get better for C.
4) For Ethan and Alaina, our other children, to not feel neglected when we have to focus so much of our attention and energy on Caleb right now. And for Scott and I to be mindful of also spending the extra time and energy in fostering our relationships with our other children, even though they may not “scream out” for us to do so as loudly.
5) For Scott and I to have wisdom in discovering the best methods and means to help Caleb deal with his anxiety.

We all face challenges and struggles in our lives as parents, and this just happens to be the specific challenge we are facing right now with Caleb.  I was reminded tonight though of a promise from the Giver of life, who gave Caleb to us.

"The Lord says, 'I will guide you along the best pathway for your life.  I will advise you and watch over you.'" - Psalms 32:8 (NLT)

I am encouraged.

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.