Hi there folks!! I know it has been a long time. I have decided not to take down the blog, because well … I may have more to share. I wanted to give an update on what has been going on. We have literally been nonstop between school, doctors, David’s job, and I have been training to teach kickboxing at the Y. I have taught three classes now! I love it, but I tell you the first time getting in front of everyone was so extremely difficult. After I got over the initial anxiety attack, (well hidden from all) I did pretty well. I have gotten better each time, I just try to have fun and make it fun for everyone else. So far I have gotten a lot of positive feedback and great constructive criticism to make some things better. Still I just started and there is always going to be room for improvement.
Overall we are doing very well.
There are many good things, such as going through the first round of state testing and everyone recovering fairly well. Since they changed the tests though, there is really no telling what the results will manifest. Daniel could not type out all of the paragraphs and essays they wanted. It is rather ridiculous to have no other type of testing for children who are like Daniel and struggle with writing, typing, and dealing with multiple, complex, abstract questions. But oh, well his teachers know how smart he is and we do not put too much stock in those tests anyway. It is just frustrating to feel like I am putting him in a situation that does not work toward his success.
However, it was a success because he had fun despite the testing and he felt proud of himself, so YAY!
Ariel and Joshua have been doing great, they felt good about taking their tests too so I will not harp on it any longer. They love going to kid’s boxing and last week they did basketball camp. This summer they are participating in several different camps and they are really looking forward to it. There is not much else going on other than school and their Lego group. There have been some challenges with trying to transition to David’s schedule. He leaves for a week or longer about every month . My grandma has helped when she can, but it gets a bit taxing. No matter how much advance notice I have, I still do not transition or recover well from having my schedule interrupted. I have times when I can do ok, but it always makes me disorganized mentally and heightens my anxiety — though my transitions times are shortening, that is good.
David is doing well too and enjoys his new position, it is a lot more responsibility, but he likes that.
Unfortunately, for Daniel his pains have not gotten any better. He started having a great deal of pain in October, we and the doctor felt that it was growing pains. It could be, but now it has spread to many of his joints and he complains about it being at the bottom of his feet, wrists, bones, he says that it feels like it is ripping apart. I am concerned that it is an autoimmune disorder. We tried to get blood work, but his anxiety was too much and he would not let them. I still need to reschedule that, but he has other appointments ahead of him. Last Thursday he had a sleep deprived EEG done, we are trying to find out if Daniel is having seizures. We have to wait 7 to 10 business days. The neurologist needs to look over the results to determine if Daniel needs to get into an MRI sooner.
The current wait is up to the middle of June.
He has an appointment with ear, nose, and throat doctor to see if we can find anything out about his heightened sensitivity to sound. It has gotten increasingly worse to the point where he will smack his ears and start screaming or go into a panic if he if accidentally startles himself. However, these things are off and on and can be triggered by being overwhelmed with sensory input or anxiety. He could possibly have tinnitus, we may get an official diagnosis of auditory processing disorder and/or we may be able to discover something about his vestibular system. We hope we can rule things out or find some answers to help him. We did start him on a low dose anxiety med. He had become practically non-functioning due to his anxiety about his pain. The fact that it was coming and going and he never knew when it was going to hurt caused him anxiety that on top of his daily anxiety had become too much for him to bear. He started to stop eating, drinking, barely moved, would not do school, could not focus on anything, and was having frightening meltdowns regressing to behavior he had not done since he was nonverbal.
We made the choice to try anxiety meds first to see if it would help.
It has helped him so much, he still has the pain and does have anxiety, but he is not in a constant state of flight or fight. He has gotten back to being his happy self despite all that he is going through. He has been able to catch up on his school and is doing so good. Sometimes I am overwhelmed with how hard he fights and goes through and still manages to keep on going with a positive attitude most of the time. It is awful to feel so helpless in helping him; I can’t stand that fact that I cannot fix this right away. I can only hope all that we are doing to see what is going on will lead to some answers and find something to ease his pain. I couldn’t figure out why yesterday I felt so emotional and down. It occurred to me that all of this may be stressful.
I still am not sure, but I think any parent may feel stress and overwhelmed by all of this.
Of course, I am analyzing myself and my emotions. The questions pop up, Why are feeling sad? Why are you so fatigued? Why do you feel like crying? What is wrong with you? Other people go through this and have to do this too so what is your problem? I don’t see those parents, I don’t see their responses or how they handle it. I do not know how to respond in this situation so for some reason I automatically think that I am doing it wrong or that I should not be feeling certain ways. I have done more things in the last few months that have pushed me socially and physically than I ever have. Calling doctors is a literal terror for me. I had panic attacks before calling.
I knew I had to do it so I forced myself, for Daniel, and every time it got a little better.
It still would put a huge knot in my stomach and fear through my body. Why? Nothing terrible happened. All of the medical paperwork has been overwhelming. On top of that paperwork I had to go into the YMCA to fill out paperwork for employment. That took over an hour, I have not done that in so long I had a moment of panic. Thank goodness for iphones! I was able to retrieve all the information I needed instead of trying to remember it all on my own. That is another situation that caused me a great deal of stress. I have been pursuing a position at the Y as a group fitness instructor, for some reason my situation as taken so long. There have been multiple things happen out of my control and their control that has caused it to take much longer than it typically takes.
It sent me into moments of panic, paranoid anxiety loops, at times overcome with black-and-white thinking, leading into thoughts of giving up on everything.
Finally, I resolved to being so determined that I kept pursuing it. Everything started to fall into place and I reached my end goal of filling out paperwork for part time employment at the Y. I am still waiting though because it takes about 7 business days to go through AFTER they speak to my contacts and then, run a background check. Ugh! All this waiting for Daniel and for me is anxiety inducing. Oh, I forgot Daniel was reevaluated by a SLP and instead of language delay she thinks he may have language processing disorder. He has a new SLP locally that we meet with every Weds. He started three weeks ago and she is evaluating him for LPD.
He likes her a lot and is doing things for her that he has flat out refused with the virtual SLP.
He is going to be reevaluated by an OT in the next few weeks too to determine what needs/resources to get him here. He is just not able to process virtually anymore. I think it is all too much for him and he cannot concentrate. The school was in the process of getting us in home speech and OT therapy, but it is taking a long time and if it is going to happen it looks like the time frame will be next year. He really likes one-on-one time with people and he does like that physical interaction, he seems to do better when he can be with the person. I hope it all works out.
I think I filled you in on everyone for the most part.
Today is my birthday! Yay! I feel good, I love getting older and my life is on a great path at the moment. Still I find myself consumed in feeling so alone at times. Most days I do not think about it. It is when Daniel is going through so much and I have no one to talk to or I feel like no one is there or understands that it starts to creep up on me. I don’t need much, I just need to be reminded that I am not alone. I have been surrounded by so many people lately and the same old feelings flood me – I am lonely, I am different, I am awkward, I do not belong. No matter how much I talk and share in commonalities with people, the fact remains my words, much of the time, have very different meanings.
I leave after having wonderful conversations feeling as if I did something wrong.
I wonder if they really like me. I ponder what I said, did I share too much, not enough, did they understand what I meant? I question if they truly understood or were they pretending. Did I talk too much? Was I too excited? Why do I feel so disconnected after engaging in such positive human connection? It never goes away. I do the same thing with texts and emails. A few weeks ago, David was gone and it was one of the worst weeks we have had in a long time. I will not share details, but it was rough beyond words. I reached out to the only person who has some sense of understanding, David, and he was in the middle of an important meeting. He couldn’t talk … I had gotten to a point where depression was consuming me.
The irrational thoughts flooded my brain and I could not shake them.
The world was dark, and I just wanted it to stop. I sank, as I have always done in the past. I sank, but continued to take care of everything. I did not stop, my children needed me. I did not have a choice to stop. I could not reach out to anyone because it felt like no one was there. When these thoughts start to take over it is so hard to believe that anyone cares or even remembers that I exist. I told myself, You are alone, You have always been alone, and You have always been able to do it. Now get up and do it. This was a different type of tone then my past voice. This voice had a different strength to it. It wasn’t a tone of sadness and despair, it was a voice of you have been able to handle it in the past and you can handle it now.
There was a slight difference in that my aunt messaged me a couple of times to see how we were doing.
And after hearing that inner voice, I made a choice to reach out to my dad, step mom, and my mom to let them know what was going on with Daniel. I was not going to feed my feelings. I realized that I what I needed was for people to know all that Daniel was going through. I needed people to show empathy/understanding for him and understanding for me as a parent. I got it and I started to feel better. It made a huge difference having my aunt send a quick message saying, “Hey thinking of you all. How are you doing?” It gave me a boost. It occurred to me that no matter how many people I have in my life my struggles, my issues; my daily life has got to be dealt with by me. I need to figure out what I need to help get out of that sinking feeling. I thought about it and realized that this feeling is somehow apart of me and it looks as if it will not be going away. I tend to get down when I feel like there is no one who can relate to what I go through with some of Daniel’s struggles and my own and I get overwhelmed and tired.
I know that there are people I could reach out to, but the “I do not want to be a burden” voice kicks in or I get too busy trying to keep everything going that I don’t.
There are others that I could contact too, but they don’t get it. I find speaking to people who do not understand more stressful and I end up trying to explain too much which in turn makes me feel even more alone and my family more misunderstood. They do not know what to say or how to respond. I also feel bad at times because I cannot give a whole lot back to people in my current life’s journey. I give what I can to people. I care, but so much of the last few months have felt as if I am an island all on my own. The more I thought about it the more I realized that I have always felt this way so I need to find peace with it. I need to find peace with me taking care of myself. I need to find peace with people not understanding. I need to find peace with being surrounded by groups of people and feeling alone.
I need to accept all of this, but you know I said all of this before.
I forget. I find myself feeling so “normal” and like everyone else when I am going and going; doing things that I love and/or I keep busy doing what people do on a daily basis. Things like making phone calls, texting, talking in the waiting room, or going to the store more than once in a day. Until I realize that I am exhausted from being around people. I am emotional over having a simple conversation. I am filled with anxiety about what I said, did, or I don’t understand a look someone gave me. I am able to fit in so well to the point that I fool myself, until I cannot do it any longer. Until I remember that I cried right before I made Daniel’s doctor appointment because I was so anxious.
Until I have to ask someone to repeat themselves multiple times, not because I cannot hear them but because my mind is incapable of deciphering their words.
Then, they look at me like I am some sort of idiot and start to talk louder or slowly in ways that feel demeaning. Until I stand in the middle of the boxing gym surrounded by my team, and see these personal connections that I do not seem to be able to make. I watch in amazement at the comradery between these people, how is that connection made? I feel it toward people, but somehow I do not feel it back. Do people feel that way toward me? If so, why doesn’t it feel the same for me? … Until I have to talk to myself for an hour in order to start writing an email to find out the status of my employment and then, spend another hour on three sentences getting stuck on the closure. How do I end this email!? There are so many untils, so many I have shared before, and so many new ones since I have ventured out into my community much more.
But you know, I haven’t let any of this stop me.
I have plans and goals that I intend on completing. I still feel all of the same things, but I do not let them consume me. I am alone, but I am not alone. I know that there are others who feel this way too. I may not speak to you, or have regular contact with you, but I know you understand what I am saying. Because I know that, it helps me keep up my strength to keep on going. It provides a stronger voice to pull from when I feel so isolated that it hurts to breathe. I also, know that I am alone and that is ok too. I can do a lot on my own — I just need to remember when loneliness comes over me I need to reach to those who will remind me that they are there. I need to come back to my blog and write when it becomes unbearable. I don’t need a lot, but I do need to have glimpses of hope to keep me going. I kind of went off on a tangent, I have not written in a while you know!
I hope you all have a great rest of the weekend and now I going to go enjoy my birthday. I am 42 years old today! Whoo hoo, I love birthdays! Happy Birthday or A Very Merry Unbirthday to you!