All About Me!

In this day and age of parenting and homeschooling moms don't typically get tons of "me" time. I've been a missing in action lately, so I thought I'd write a fun little post reminding everyone who I am :) My name is Teresa and I've been married to my husband for 23 years in June.  We have three children.  Our oldest is 20, married and in the Army with our second grandchild on the way.  Our middle is 17 and will be graduating next year.  Our youngest just turned 12 and will be going in the 7th grade next year.  We usually are identified by our spouses or children, so that should sum up all about me that you need to know! :) Just kidding.....

I have loved reading for as long as I can remember and more often than not when I have free time you'll find me with a book in my hand.  I enjoy doing crafts and was taught by my grandmother at a young age to knit and do needle point. I've been teaching myself how to crochet over the last few years with the help of YouTube and friends. I really enjoy it, but have found the last several years that I can't do that type of activity for long because my hands start to grow numb :( We homeschool our children, so another passion of mine is reading on the internet about what curriculum other families use, fun projects and pretty much anything to keep my kids from complaining about doing their school :) I'm very active in our local homeschool co-op as well as being on a group to help reach out to those with undiagnosed and rare disease.  I'm a huge Dt. Dr. Pepper and Dt. Cherry Pepsi fan which I know I need to stop, but they are just SO good! I do enjoy a cold coffee especially when it's full of lots of sweet goodies.

Someone asked why I started blogging and I'll tell you it all goes back to the books! I had debated about starting a blog mainly for family and friends that aren't near us to see what we were doing. Then I learned that you could get FREE books just for writing your opinion about them. That hooked me and that's been one of the biggest parts of my blog. I enjoy talking about homeschooling and reviewing products which I'm able to do being part of the Timberdoodle Blog Team.  What's better than free products just for using them and giving my thoughts? :)  Our youngest has some special needs and a rare genetic condition, so the blog gives me a place to reach out to others in similar situations as well.


Here's a recent picture from when I was in Boston to meet with my fellow PEER members. I'm the one in the tropical looking shirt :)

I hope this helps give you a little glimpse into my life and who I am. Feel free to ask questions and I'll be more than happy to answer them!. 

Review: The Stress R.E.L.I.E.F Method by Chou Hallegra

Pretty much every mom I know deals with stress on a daily basis. I'm not sure why, but most of the men I know don't seem too! I'm not sure if it's the way they process things that they just don't put too much thought into what they can't fix.  When a friend told me about The Stress R.E.L.I.E.F Method I was really anxious to read it. I have to admit that I let everything get to me from the big things all the way down to the little bitty things that most people don't pay a second thought too.  One of the first things that touched me in this book was the definition of stress. The definition of stress is "your body's response to a specific situation or an accumulation of the situations we experience.”   We all respond to situations, but it boils down to how we respond! We need to learn to take action, but it's got to be simple because the more complicated it is the less chance there is of us completing it!  One of the quotes that really hit close to home for me was “We become so used to numbing our pain that we completely stop listening to our bodies” I had to stop and think long and hard about that statement. Do I ever listen to my body and when I do can I understand what it is telling me? 

As I was staring to read this book I think what I read on pg. 12 opened my mind the most!  

I used to be a woman who was tossed around by her

challenges. My mood used to be a reflection of my

circumstances. Every little thing stressed me out. I

thought I had every reason (or excuse) to be stressed

out. From being in a new country with not much

support, to raising children with medical and

developmental needs, to being a single mom after

working so hard to maintain a hard marriage for a

decade. I thought I had the right to be stressed out.

I thought it was normal for me to be stressed then I

learned that my circumstances do not have to control

my mood, my emotions, and the rest of my life. I

learned that I had control over how I felt about the

things that were happening to me. I learned that life

will keep happening, but I can do something about

maintaining my peace and my joy.

That spoke directly to me and basically how I have lived my life. It was time for me to open my eyes and figure out a new way to deal with life!  The author, Chou Hallegra, was no stranger to harsh circumstances.  She'd had health issues, marriage issues and pretty much all the same issues we all have. She decided it was time to take charge and that's how the Stress R.E.L.I.E.F Method was started.  This method has 6 steps that will help you create a life of LESS stress. Isn't that what we all want??  I've always thought of stress as a NEGATIVE concept and one that I didn't want in my life. Stress can be POSITIVE when you think about certain circumstances. If your child walks into the road and you are telling them to come back to you because you see a car coming that is stressful. If they immediately listen and come back and no harm has come to them then that stress was ultimately good. I don't think we think about stress is a positive way and there fore it beats us down further than we already might be.  I know I personally had never though about stress in anything, but a negative way.  

There are three types of stress that we encounter.  Acute stress is the most common. Acute stress is the immediate reaction to a new challenge.  We face many new challenges a day, but often they are quickly taken care of and that stress shouldn't continue on long-term.  We have all encountered acute stress in our lives.  Chronic stress is very intense and long-term.  If you've had severe health struggles or financial troubles that have plagued your life for years you have dealt with chronic stress.  Even though this type of stress is long-term we still can all respond to it differently.  How I might respond to financial issues might not be the way another would. How we respond dictates the stress that we have.  Episodic stress is in the middle of these two and happens on a daily basis.  This might be something you deal with when your child is medically fragile and in the hospital.  

So what is The Stress R.E.L.I.E.F Method??

The Stress R.E.L.I.E.F. method is a step-by-step

guide that was created by Chou Hallegra. She based this method on the principles of Cognitive-Behavioral Therapy and Person-Centered Thinking.  Person-Centered Thinking is a set of tools, skills and values that give people control of their lives.  Cognitive-Behavioral Therapy helps us to understand that our feelings determine our behaviors.  In order to deal with stress effectively we must understand our feelings and deal with them accordingly.  The 6 steps are as follows: 

1. Reflect on your stress level

2. Evaluate your stressors

3. Leverage your strengths

4. Initiate self-care

5. Examine your level of control

6. Find freedom

We can't see how our stress level changes unless we know where it started. There are many factors that cause us stress including: 

Mind

Body

Spirit

Relationships

Work

Others

As we figure out how each of these affects us we can then start to see progress.  We started off taking a perceived stress test.  It ranked us into the category of how stressed we currently are. I, of course, was maxed out in the stress level!! We can't measure what we can't identify and we can't track it if we can't measure it. It all starts here with our stress level!

We next have to evaluate our stressors. Most of us probably know what causes us stress, but do we really stop and think about how we can change those stressors? I might not have control over situations, but I can control my reactions. My children could make a decision that hurts them and I don't like it, but I can control how I respond to that situation. The busier we are the more likely we are to deal with stress.  We need to do things because we want to and not because we feel we should. Often times we agree to do something just because we feel we should. That later causes us to feel stress.  Often times there are people in our lives that cause us to have more stress. We might be tempted to just stay away from them, but often times we just need a temporary distance and the friendship can continue. I learned that I often contribute to my own stress level based on my reactions. All this time of thinking I can't control something, but I really could control my response and that could have lowered the stress level.  Our thoughts are a huge factor in our stress levels.  The actions reinforce the thought, the emotions are linked to the thoughts, the stress is linked to the thoughts and we are the only one that can control our thoughts. How many times have I told one of my children that he/she is responsible for his own behavior. Was I listening to that? Yes and no, but not in the sense that it directly was attached to my stress level. It's amazing how reading this book has opened my eyes in such a way that I just can't believe I didn't see it before.  

We have to learn to leverage our strengths. The things we enjoy and are good at is what we should agree to help other do. If I am terrible in spelling and grammar, which I am, then I shouldn't agree to proof someones paper because I'm just going to be frustrated. Since I enjoy baking I should always agree to help in a bake sale or with a potluck. By using our strengths to guide our way our stress level will be reduced.  

How many moms will tell you they don't have time to do fun things for themselves? If we don't initiate self-care then we aren't able to help others. When you are flying in an airplane they tell you if the oxygen masks come out to use yours first and then help a child. If you help your child first then you don't have anything left. We have to learn that it's OK to take time for ourselves. It doesn't have to be hours and hours each day. We can read a book for a few minutes, take a short bath, enjoy a call with a friend, take a short walk, etc. 

The next to the last step is to examine the level of control you have.  I know many people that believe they can control it all where I tend to be on the complete opposite side of the spectrum and think I can't control anything. The difference in these two types of thinking is called "locus of control" and was created in 1954 by Julian Rotter.  People that have this inner locus of control believe they are in charge of their destiny and that they control their lives. People with an external locus of control believe that what happens will happen and it's not in their ability to control it. We might not always be able to control every situation, but again it goes back to how we response. That controls the stress. 

The final step is to find lasting freedom.  If the stress in your life is cyclical, which I believe mine is, then we need to break that cycle and find freedom! We have to learn to apply these steps every single day otherwise these fires will continue. We have to learn to change our thoughts and it will greatly reduce the stress in our lives.

There are quite a few worksheets spread throughout this book that I thought were very helpful. Knowing my stress level gave me a good starting place. I learned that my character trait is humility. I wrote down some of my triggers and and really learned that I have to change my thought process. I can control my emotions and I just haven't been doing it. I've been going through life thinking I couldn't control the things that stress me and that might be true, but I could control how I reacted to them.  

I have really enjoyed reading The Stress R.E.L.I.E.F. Method by Chou Hallegra. She's very transparent in her book and I like that because when I see that others can relate to me I'm more open to what they have to say.  I'm excited to try these techniques and see how much it lowers my stress level!

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**I received a free copy of this book from Chou Hallegra for my honest opinion." 

Thankful Tuesday 5/8/2018

Today I'm thankful for the progress that I have seen Issac make over the last few years. He has had years of social issues where he wouldn't even speak to those he deemed friends if they didn't start the conversation. We've had anxiety issues pop up within the last few years and that added another dimension to Issac. It used to be and still is sometimes that if he's afraid to do something he just won't do it. He's developed a love for basketball recently and got a goal and new ball for his birthday. Today the ball rolled all the way down into the back. It was deep down into the bushes. I told him he'd have to wait until his dad came home because I wasn't go back in the bushes. He went back there with his shovel and the entire time was saying over and over again that he could do this because this is what explorers do. He then said that if people didn't explore then Indiana Jones wouldn't have found America. Not sure where that came from, but I was extremely shocked and pleased that he pushed forward and went to get the ball. There are still many issues we deal with and tough days, but I'm thankful for these times of progression!

Intensive Home Therapy Update

I realized I haven't done an update on the Intensive Home Therapy we have been doing with Issac. We started right before Thanksgiving and are going into our 5th month. We saw a few inklings of better behavior and working on coping skills, but that seems to not have lasted. Around Christmas we took off two weeks for the holiday and then my aunt passed away, so we ended up with a third week out of school. The small improvement that we had seen haven't grown much since then. We are better in the sense that we don't have multiple meltdowns every day that can last for hours. That is huge, but we haven't seen the grand improvements that everyone thought we would :( We have had someone in the house anywhere from three to five days a week for between one and two hours a day. That has been a HUGE adjustment for us with our school life as well as everything else.

We were recently told that Issac isn't going to be approved for anymore Intensive Home Therapy. They believe that he's been taught the coping skills, but isn't necessarily able to use them. They feel that is related to his IDD, Intellectual Developmental Disability. When I heard that I thought to myself, does he have an IDD? I don't know and the truth is that is something we have been trying to find out for a long time. He understands lots of things and can have VERY intellectual conversations with you. Then he can want to get "huggies", climb into bed with us, sit on my lap and act about 3 years old. Part of me wants to be done with this entire thing, but part of me feels that MAYBE we are FINALLY getting to a person that can truly help us. For years I have said that Issac understands certain things and not others. His Developmental Pediatrician thinks all his "tantrums" come from the inability to problem solve. All the testing that has been done has had some large gaps in areas that she feels is the cause. What is the solution then?? We were told it was going back to Occupational Therapy, but they didn't really address any of those issues I felt. It seems to be a never ending cycle of going from here to there, but I feel I have to try for Issac's sake. I want him to be the best he can be as he grows older.

Thankful Tuesday 1/16/2018

Today was a good day here at the house.  I actually had lots of things that I could think of to be thankful for today. This may seem strange, but today I chose balloons (LOL) My kids can have the most fun with a $1.00 pack of balloons. The other evening I picked up a few things at Family Dollar to have on hand to do a few little activities with Issac. His therapist made coping balls with him a few weeks ago. They rolled tiny balls of playdough and dropped them into balloons. They then tied them and you could squeeze on them if you were upset. He misplaced his, so I decided today we'd make a few more. He was actually having a rough moment and making these took his mine off it and basically reset him. You could easily fill these with rice or sand as well. I like the playdough because it's a firmer texture and won't make a mess like some of the other items could.

From there Issac started blowing up balloons and we hit them back and forth.  He also blew them up and just let the air blow back in his face. Something so simple, but could make an afternoon so enjoyable :) It may seem strange to some, but today I am thankful for balloons :)

Intensive Home Therapy Update 1/12/18

It's been about six weeks now since we started intensive home therapy for Issac. When they say intensive they are certainly correct. Up until Christmas someone was here Monday-Friday for almost 2 hours a day! It's been very hard to adjust our work and schedule. We've got school to the minimum for Issac because I didn't see any other option.  They have just recently bumped him to four days a week. As he continue to do well they'll drop it down until it's one day a week. Then he'll be turned back over to a regular counselor and will continue with them for a bit. I honestly feel this is the hardest and best thing we've done. I do seem small changes in him. We were having multiple issues a day and often times they'd go for hours. Up until last week we'd had several days with only one issue per day and a few days with NO issues! Such an answer to prayer. We started school back this week and all I can say is it's like we've never even started this therapy. He had a horrible day Monday, Wednesday, Thursday and a little bit today. Thankful each of those days other than yesterday one of his counselors came and were able to talk with him and try to work through some of the issues. I almost called them yesterday to see if they'd come out or even talk to him on the phone, but he ultimately fell asleep (LOL) I think the three weeks off school was too much or he's struggling with my aunt's death even though he doesn't really even seem to understand it. I'm not sure what's going on, but this afternoon was better and I'm thankful for that! They've been working with him on coping skills and I've seen him use them a few times, but this week he refused. He ranted about how the dr's didn't know what they were doing, he wasn't using stupid coping skills, etc.  I don't feel therapy has failed I just think this shows how life can be like a roller coaster. Sometimes a bad week happens.

We've learned so far that he tends to jump to the negative for almost everything. Those negative thoughts then get his mind going and he gets angry. One of his counselors has been working with him quite a bit on how to change the negative thoughts into more positive ones. One of the other counselors taught him some things he could do with his body to help him realize when he's getting calm. They made stress balls-playdough inside balloons and I've seen him use those a few times. All in all I think he's made some good progress for the time he's been in it. They say it's usually a minimum of six months and can continue more if needed.

Intensive Home Therapy

I can't believe it's been almost a month since I've posted! So much has been going on that I've hardly been able to catch my breath :) One of the biggest things happening here right now is that we have started INTENSIVE home therapy with Issac. When they say intensive they mean it (LOL) He has a team of three people, two ladies and one man.  Someone is here Monday-Friday for TWO HOURS each day! Our life is already hectic and I struggle to do appointments, school, etc., but add in this for two hours a day and it's really been hard.  Issac prefers two of the people and really doesn't care for one of the ladies. It's basically because she called him out on his behavior one day and he hasn't liked her since.  Things are going as well as can be expected I think. It's hard having people in your house and watching what you say and do all the time. I feel like Issac really connects to Chaz, the one guy on the team.  He's been working with him on his feels, actions, behaviors, etc.  I think that's going to be huge for Issac because he often feels things that don't seem valid to the rest of us. He's talked to him at length about it's ok for him to have his feelings, but they might not get communicated appropriately to us.  The lead on the team started working with him on coping skills this week and told us to practice them daily. I think that will help him when he needs them because before we were trying to direct him to certain behaviors, but we were doing it in the heat of the moment. The hope is with practicing them when he's not upset that he'll recall it when he is upset.  The coping skill she's started him off with is what she calls 5, 4, 3, 2, 1.  He's suppose to list 5 things he can see, 4 things he can hear, 3 things he can feel, 2 things he can smell and then 1 deep breath.  I'm hoping this technique can and will help when he's upset.  She also talked to him about when he's frustrated or confused what he can do. They made a card to remind him to ask someone to explain what they said, tell someone he's confused or ask them to please repeat themselves.  We've completed two full weeks and I was originally told the plan is for six months. It's so hard to imagine six months of this, but I feel like this is really what we need. It's very hard for people to imagine Issac in a rage when they see the sweet side of him.  I do have to say it's not been as bad as I expected (LOL) The people are nice and I really do feel comfortable with them in the home. Hopefully this is going to be the answer to prayers I've had for a while! :)

Rare Disease Day 2017

It feels strange to say Happy Rare Disease Day, but it's amazing how many people I know who are affected by a rare disease of some sort.  Having a rare disease affects us all in different ways. For some we just want to know what's going on with our kid and what it means for their future.  Some people need to know to try and just live each day the best they can for their family member.  For some it's all about getting the word out and trying to help others.

Rare Disease day is something to celebrate! We are all rare in our own way, whether it's medically rare or rare in another way. We have 3 children and they are all RARE!!! Two are rare because of their abilities and one is medically rare. The one that is medically rare is also rare because he differs from anyone else in the house. He has his good hours/days and his bad hours/days :) He struggles because he has to wear 2 "torture" devices every night and he doesn't understand why his friends don't have to wear them. It's hard for him to understand that he is rare in a different way than his brother and sister.  His sister is rare because she has an amazing gift for the dramatic arts. Not everyone can show the talent and emotion needed to do dramatic arts.  She is rare because she is amazingly smart, even though she will argue that fact with you :) She has a wonderful gift of recalling what she's read, whether it fact or fiction.  She is rare because she has a hard, tough exterior, but she loves deeply and hurts deeply. Our oldest is rare because he is such a hands on person. You can give him a book that tells you how to build a dump for a lawnmower or you can give him the wood and nails and watch what he makes. He's amazing with vehicles! I'm not sure there is anything on a vehicle that he hasn't worked on. Some was trial and error in the beginning on his own vehicle, but now people PAY him to fix their cars. I think that's pretty amazing for someone that just turned 18. He's rare because he can be so very sweet and thoughtful for others.  They are all rare, but in different ways.

It's great to reach out to others and help them, but what we also have to focus on is giving our medically rare children the best we can give them. If we assume they can't do certain things then they won't be able to. Issac is almost 10 years old and he's just recently exited out of ALL therapies.  For 9 years we've been in at least one if not two or three therapies a week. It was a struggle and it was hard on the other two kids. Why did we do it? If we didn't push forward then like we did I don't believe he'd be where he is today. I hope that one day my older two will really understand that they were never pushed aside, but at some moments the focus had to be on the therapy for Issac. I know deep down they understand, but as a parent it's hard when you feel like one is getting more than the others.

I hope that we can all embrace what is rare about us! Too many times people are judged and looked down upon for a difference they have. I pray that as we move forward we can all love what is different and rare about us and those that we love.


#raredisease

PEG Update

I'm not really sure if I should say PEG because that's probably NOT going to continue to be the name (LOL) One of the parents I met didn't care for the name, said it reminded him of a pirate's peg leg (LOL) That started a discussion with everyone at the meeting about whether we liked the name PEG or not. During the meeting as well as dinner that night there were some great discussions about names. Some even came from family members that weren't there! It's amazing what people can come up with when working together! Maybe the next time I update I'll have a different name for it :)

What can I say about the meeting and the experience?? For me it was a fantastic experience. The ride from the airport was beautiful. The buildings in the area just amazed me. When I checked in I had a wonderful gift of local "snacks" to enjoy.  Paul Mazur, a project coordinator, thought it was be wonderful to get get some local goodies for us all to enjoy. What a wonderful way to start off this group with goodies and a sweet note welcoming me! I do have to say I ate almost all the chocolate items and brought everything else home. Issac and Brianna tried the Salty Oats Oatmeal Raising cookies from kayak cookies and Brianna is now insisting that we need to order some :) Emily Glanton was huge in making these last few days go smoothly for us as well. I'm not sure that anyone could have taken better care of us than these guys. 

The meeting had us meeting SO MANY NEW FACES! Our genetics counselor was there, a site coordinator from Vanderbilt, several doctors and many, many people that are just part of the UDN, Undiagnosed Disease Network, program.  These are a few of the people that we got to spend time with.  Isaac & Alexa

Isaac & Ingrid

Kelly

Anna

Ingrid and Alexa were with us the entire meeting and they were so truly excited to hear our thoughts and find out how to reach out to new families.   I've never participated in anything like this before, so I wasn't sure what I could do.  Ingrid asked us what could we each contribute to the group. In my  head I was thinking I don't know! What can I contribute?? There were so many things that people had in common and yet such wide spread differences as well. One of the dads has created a wonderful resource to help other parents in dealing with insurance companies, fire, police, etc.  I think what he has created can and will help SO many other parents in similar situations! One thing that I didn't quite expect to feel was how different our situation is to most others. I have a dear friend that has several children that are medically fragile. I've heard all that she deals with, but yet that's not our daily life. Most of the parents I met deal with very similar situations on a daily basis.  It was really hard for me to relate and made me wonder if I was right for the group! I honestly had not thought about that part of this journey! What is rare? What does it really mean?

rare

/rer/

adjective

1. (of an event, situation, or condition) not occurring very often: "a rare genetic disorder" synonyms: infrequent, scarce, sparse, few and far between, thin on the ground, ...


All of our kids and the patients ARE rare, but yet they are all so different. I've always felt that when people look at Issac they don't see anything "different", "rare", etc.  Beyond Issac's size and facial features I think most people look at him as an "average" kid. I wouldn't call him medically fragile, but yet we have still faced many of the same situations these families have. When you look at a doctor's visit summary we have half a page + of things listed that Issac is dealing with. We might not be able to truly understand the feeling of having your child hospitalized multiple times, but yet we can understand searching for years for answers. We've known for almost 10 years that something was "different" and going on in Issac's life. We do have some answers now after spending a week at Duke and yet in some ways the search is still going on. We now have to learn what our information means. We've wanted answers for years, but yet in some ways we still don't have much.   I've gotten to the point where when we test I'm not counting the days for results. I think after you don't get answers for so long you start to feel that way. When we do gets answers now I'm excited, but currently those answers don't change our life. At some point we may get information that will change Issac's future or we'll need to plan differently, but for now our current plan is working. 

As one parent said we are now a club and it's nice to be in that club with others that understand. I'm excited to be able to reach out to others and help them digest the information they get. Even if your child doesn't have the same gene, syndrome, disease, etc. every parent still wants that person that can understand them in a way that many of their friends and family members can't.  

Rare Disease

Last year was the first year we attended Rare Disease day. It was a wonderful experience and I'm so thankful to have gone. The more I talk to people the more people I find out that have a rare disease. It happens in so many families and some never get answers.  They just came out with the video for this year and I wanted to share it!

2017 Video

You can go here to learn more about Rare Disease Day.  I heard about running 4 rare a while back.  I think it's amazing that people would go out and run for those that can't.  I would love to be able to go and watch one day!  You can check out  running 4 rare as well as their facebook page.  

#Running4Rare

#RareDiseaseDay