Okay, the title doesn't say it all. In fact, it's been pretty much the opposite lately. There are a lot of folks telling it like it is - sometimes telling us too much. This is not a tell all, it's just real, that is where most of us live. Yet, we want to keep it positive and uplifting...right? How do you do that when your life is surrounded by circumstances that are not so positive and uplifting? After awhile, it's hard to keep smiling and pretending like everything is alright. When you're continually bombarded by things that are traumatic, stressful, filled with drama you don't need or want, and just plain unfair, you get tired. Most parents I know are very tired, and weary from stress and lack of sleep. As parents of children with special needs, we're under enormous pressure every single day, from the moment we wake up until the moment we get to lay our head on the pillow at night. Yet, we get up the next day and do it all over again...we just keep pushing ourselves day in and day out to get things done, and to keep things going. We don't have options. Quitting is not a choice that we have. No one is going to come along and do it for us, and if they do happen to come along and offer us a break, it's all still there waiting for us when we get back.
Most of us have the head knowledge that taking care of ourselves is very important. We know in our minds the importance of eating right, getting enough sleep, and finding time to exercise every day. We know we should drink plenty of water, we know we should relax, and we know we should take regular stress breaks. We've been told that taking "me time" makes us better people, better parents, better spouses...yadda, yadda, yadda. Okay, so why don't we do all the stuff we know we should do?
I had some time to ponder this a couple of weeks ago, after a ride in the back of an ambulance, on the way to the emergency room - hooked up to an IV with an oxygen mask on my face so I could breathe...while lying flat on my back unable to speak. I literally could not move. It felt like an elephant was sitting on my chest, making it incredibly difficult to breathe or speak. Something similar had happened to me a couple of years earlier, and was accompanied by what appeared to be seizures with body movements I could not control, with twitches and spasms that left me incapacitated afterward. It was scary. What was even scarier is that after five days in the hospital, no cause could be determined for the fainting spells, the weakness, or the seizure like activity that was not seizure related. A couple of years ago, I was diagnosed and discharged with "extreme weakness and syncope." This ER visit went pretty much the same. All the testing came back with results that were "normal" or "within range." I was given shots of prednisone and told to keep taking it. I was diagnosed and discharged with "exacerbated asthma" even though no tests had been performed to determine my lung function.
For the last several years I have been struggling with weakness, extreme fatigue, uncontrollable twitching and fainting, and spells where I literally couldn't speak or think clearly. When the doctors asked me if I was under any stress, I really had to hold back the laughter...stress? What's that? Nah! Not me! Who has time for stress? While lying in the ER waiting on test results to come back - which always seem to take an inordinate amount of time - I realized it was time to think about me for a change. My years in the military had conditioned me to be tough. From basic training until the time I decided to end my military career, I lived by the motto, "Suck it up and drive on soldier!" On road marches (sometimes 12 miles or more with 75 pound ruck sacks on our backs) and during PT (sometimes up to six miles), we sang cadences that encouraged us to be tough, get the job done, keep pressing on - and never quit, never look down, just keep on keeping on.
While lying in the emergency room...I realized this mindset has actually been working against me. Up until this point I had been of the mindset that if I just ignored the stress I felt, that somehow it would not affect me, or that maybe it would somehow just go away all on its own. However, I am now living the painful reality that we can only be strong in our minds for so long, eventually our bodies will slow down the processes of our mind. Though I was somehow making it in my mind, and thinking I was holding it together...my body was now sending up giant red flags to signal that it was time to get the body and the mind in sync with one another. I was not taking care of my body, and while my mind was "ignoring" the stress, "being strong" and coping with everything...my body could not keep up, and was now going on strike.
We all have stressors in our lives, and I know that there are many who are dealing with much more stress than I am. A few of mine include the death of my mother, and the death of my father who passed away a few years before her. She was my best supporter, my best friend, and one of the few people in this world that my son was able to connect to. She just knew how to talk to Malachi instinctively - and knew nothing about autism! She was the kindest, sweetest person I have ever known, and part of the stress I am under now is that I have not really let myself grieve for her. I have been holding that in too...because I have a son with needs that keep me so busy I didn't have time...or so I thought. Grief doesn't just go away if you ignore it.
Right about the time my mother died, my son was transitioning into kindergarten. It was a horrific year. He had been suspended twice - yes, that's right, suspended, a kindergartner with a medical diagnosis - not once, but twice. (Who suspends five year olds from Kindergarten? Is it really to teach a lesson to kids with autism - who hate school and don't want to go anyway)? From pre-school through first grade he had been in six different schools, that is six settings filled with the stress of challenges and difficulties that couldn't be worked through. After two suspensions, after he was assaulted, tormented and mercilessly teased by classmates, after countless meetings and requests for better supports, and after the school district's refusal to acknowledge his medical diagnosis, boldly telling me they didn't even "see" autism in my son - (while at the same time unable to help him have a complete day of success at school without calling me to come pick him up), we chose to move our son to another school district. I remember sending a bubbly, bright, happy little boy to kindergarten. He became fearful and anxious as a result of the horrible experiences he had while in the care of "professionals" I trusted to meet his needs. To this day he continues to struggle with fear and anxiety in group settings. I am learning that my anger doesn't just go away by not acknowledging it.
We tried to foster and adopt two children who were brothers. We kept them in our home for nearly six months, and fell completely in love with them. It turned into a nightmare for so many reasons that would take too long to write about. They both had issues that were much more severe than my son's. I was advocating for them and trying to get them supports and appropriate medical help, when Malachi suddenly began regressing. Three young and active boys with significant behavioral challenges ages 3, 5, and 7 (at that time) was just more than this mom approaching fifty could handle. It was heartbreaking. I've never been a quitter, and hate admitting I can't do something, but this was something I just couldn't do, so I had to let these precious boys go. We had only wanted to adopt one other child. We didn't mind if they had some challenges, but we couldn't take other children in with issues that were going to put Malachi at risk. We would love to have another child, but that dream has been dashed.
Right about that time, I was diagnosed with a Huerthle Cell Tumor on my thyroid. It's a rare tumor, and because there is so little known about it, the only way to determine if it was cancerous was to remove it for evaluation. I underwent a bi-lateral thryoidectomy, removing the side that contained the tumor. I was supposed to take it easy and rest afterwards, but didn't have the luxury of taking it easy, and complications arose as a result. Two weeks later I collapsed and wound up back in the hospital. Thankfully, the tumor turned out not to be cancerous. However, now I only have half of a thyroid and must take medication for the rest of my life.
Just in the last couple of months my son has been restrained three times at school. I don't know how other parents feel when they get the news that their child had to be restrained at school, but it makes my heart stop beating. I feel like I can't breathe, my head hurts and I cry. Images flash through my mind and it's unbearable. After asking questions and putting all the information together, I believed each of those restraints could have been avoided. There are no perfect schools, or perfect teachers, and we as parents are so imperfect ourselves. Yet we want the best for our kids. We want everything to be perfect for them. Success at school for my son is always a work in progress, and I'm just thankful that the staff include me in discussions about solutions for his challenges. He has come a long way in three years in this wonderful school district, and for that I am grateful. I accept that there will be bumps in the road that we will all have to come together to talk about, and that's just how it is. I appreciate that the staff who work with my son also love him and care about him, and want the best for him. Knowing this makes it easier for me to deal with news of restraints or other issues. However, it doesn't take away the pain of the reality that he has them.
Another painful stressor that I have been dealing with is the fact that my son was put out of a social group in the community a few weeks ago. It's a painful and hopeless feeling to be asked to take your child and leave a social group led by professional autism experts. The professionals running it didn't think he was ready to be in a group setting...and that he needs more one on one work. I question everything I am told. I did not agree. I have learned that the professionals are not always right. While the experts are great and wonderful, and an important part of my son's progress, sometimes they are wrong. They don't always see the big picture of his life. They only get snapshots of him at any given time. That being said, I do not disregard professional advice lightly. There is one professional in my son's life who I am convinced could probably walk on water! She has known him for a long time though.
I had some hard questions for my son's school after that experience. If what they are doing with my son at school isn't translating into success for him outside the school, that's something we need to talk about. Thankfully, the folks at my son's school are wonderful to talk to, and anxious to help. They were as shocked as I was that he was put out of a social group run by an autism center...and felt quite the opposite, that he IS ready for a group setting...after all, where else can he learn these skills? I am torn between what the professionals at my son's school are saying, and what the professionals at the autism center are saying. Here I am, stuck in the middle with no easy solution. Frankly, I believe he can have success in any setting if the folks who work with him are willing to work with him. Success always takes a little more effort and extra time with my son, and sometimes it's hard work...and it comes in baby steps.
As much as I adore and love my son, I do realize he isn't one of the easier kids to work with. Everyone wants to work with the "easy" kids, the pleasant ones, the ones who can't or don't talk back, the ones who can be led around like little lambs. Sigh. Yeah, autism is not pretty sometimes. He is hard work, and I know that...welcome to my world. I live with him, he's my kid...yeah, I do know he is not an easy kid to work with. Public outings can be huge challenges...read some of my other posts! Other kids with autism don't want to play with my son, but I get it. I'm not angry about that, I understand, but it's painful, very painful to realize that. However, once you get to know my son, and figure out how to get through the autism, there's a great and adorable kid, who is so lovable and fun. My son needs friends. He desperately needs opportunities to be in social settings where he can work on developing and practicing social skills. I feel so much pressure to find these opportunities for him, but am so discouraged right now because it seems there is no long term solution for him that my insurance or a state funded program will pay for.
I've been dealing with a lot of disappointment lately. Disappointment doesn't just go away on it's own if you ignore it. My son's challenges isolate our family. There are very few places we can go. They hinder us from going to church, to stores, to gatherings, to parks, just about anywhere. Attempts to go to these places is challenging and stressful, and rarely a fun or relaxing time - and usually leave me feeling exhausted afterwards. I feel an incredible loneliness sometimes. Contact with other human beings is something we all need! The parents and other wonderful people I meet through SWAN have no idea how much they support me. I have met some pretty amazing moms and dads, and though we don't see each other that often, when we do get together, it's great. We get it, we so get what we're all going through. There's no pretense necessary, no formalities, we just pick up where we left off. I love how when you meet another parent with a child on the spectrum, there is already a strong bond that is there. There is no need for so many formalities because you already have so much in common!
Sorry, I'm really rambling here...it's time to wind this novella down. So why am I sharing all of this? This is some really personal stuff, and really, who cares? Who isn't going through something? There are parents everywhere living under enormous pressure, living stressful lives, filled with stress that never lets up. I'm not sharing anything here that is new, or bizarre, or out there. I'm not the only one going through these kinds of struggles and disappointments. I don't want sympathy or pity, I will make it. I serve an awesome God who I know will see me through. I just want to encourage other parents who might be feeling like they don't have time - or don't want to take the time to take care of themselves. Stress is there, every day. As long as we're alive we will have to deal with the things that come our way. We each have a path to travel, and a load to carry while we journey to get where we're going. Personally, I want to be able to finish the journey, and be around for my son. I want to feel good and have energy while I'm doing it! I want to live the life that God gave me. He didn't intend for me to live at the bottom of a pit. He didn't intend for me to struggle under a heavy load of sorrow, loneliness, care, and anxiety. He certainly didn't intend for me to feel this lousy.
Change is ahead for me. Big changes in the way I live and take care of myself. I took a trip to see a holistic practitioner we used to visit when we lived in the Corpus Christi area. He's awesome. It was an incredibly enlightening trip. While stress was definitely a contributing factor to my visit to the ER, there are also some physical causes that are contributing to what I have been experiencing as well that the tests the traditional medical doctors performed did not find. I intend to take the information Dr. Wayne discovered through his testing to my regular family doctor to keep him in the loop. With my thyroid and the medication I take for it, I definitely want to be under the supervision of a medical doctor while taking supplements and dieting. In the next few blog posts, I'll be sharing my journey to wellness with you. I'll also share more details about my visit with Dr. Wayne and the diet plan and supplement regimen he recommended for me. In the mean time, I hope you will make time to take time to take care of you. That doesn't have to include a visit to a wellness doctor. It doesn't mean you have to take supplements or herbs, or go on a special diet. Sometimes it just means slow down and take it easy. Take a break, go for a walk, or call a friend. Do something to get your mind off things for awhile. You deserve it!
Love and Blessings,
Annette
Most of us have the head knowledge that taking care of ourselves is very important. We know in our minds the importance of eating right, getting enough sleep, and finding time to exercise every day. We know we should drink plenty of water, we know we should relax, and we know we should take regular stress breaks. We've been told that taking "me time" makes us better people, better parents, better spouses...yadda, yadda, yadda. Okay, so why don't we do all the stuff we know we should do?
I had some time to ponder this a couple of weeks ago, after a ride in the back of an ambulance, on the way to the emergency room - hooked up to an IV with an oxygen mask on my face so I could breathe...while lying flat on my back unable to speak. I literally could not move. It felt like an elephant was sitting on my chest, making it incredibly difficult to breathe or speak. Something similar had happened to me a couple of years earlier, and was accompanied by what appeared to be seizures with body movements I could not control, with twitches and spasms that left me incapacitated afterward. It was scary. What was even scarier is that after five days in the hospital, no cause could be determined for the fainting spells, the weakness, or the seizure like activity that was not seizure related. A couple of years ago, I was diagnosed and discharged with "extreme weakness and syncope." This ER visit went pretty much the same. All the testing came back with results that were "normal" or "within range." I was given shots of prednisone and told to keep taking it. I was diagnosed and discharged with "exacerbated asthma" even though no tests had been performed to determine my lung function.
For the last several years I have been struggling with weakness, extreme fatigue, uncontrollable twitching and fainting, and spells where I literally couldn't speak or think clearly. When the doctors asked me if I was under any stress, I really had to hold back the laughter...stress? What's that? Nah! Not me! Who has time for stress? While lying in the ER waiting on test results to come back - which always seem to take an inordinate amount of time - I realized it was time to think about me for a change. My years in the military had conditioned me to be tough. From basic training until the time I decided to end my military career, I lived by the motto, "Suck it up and drive on soldier!" On road marches (sometimes 12 miles or more with 75 pound ruck sacks on our backs) and during PT (sometimes up to six miles), we sang cadences that encouraged us to be tough, get the job done, keep pressing on - and never quit, never look down, just keep on keeping on.
While lying in the emergency room...I realized this mindset has actually been working against me. Up until this point I had been of the mindset that if I just ignored the stress I felt, that somehow it would not affect me, or that maybe it would somehow just go away all on its own. However, I am now living the painful reality that we can only be strong in our minds for so long, eventually our bodies will slow down the processes of our mind. Though I was somehow making it in my mind, and thinking I was holding it together...my body was now sending up giant red flags to signal that it was time to get the body and the mind in sync with one another. I was not taking care of my body, and while my mind was "ignoring" the stress, "being strong" and coping with everything...my body could not keep up, and was now going on strike.
We all have stressors in our lives, and I know that there are many who are dealing with much more stress than I am. A few of mine include the death of my mother, and the death of my father who passed away a few years before her. She was my best supporter, my best friend, and one of the few people in this world that my son was able to connect to. She just knew how to talk to Malachi instinctively - and knew nothing about autism! She was the kindest, sweetest person I have ever known, and part of the stress I am under now is that I have not really let myself grieve for her. I have been holding that in too...because I have a son with needs that keep me so busy I didn't have time...or so I thought. Grief doesn't just go away if you ignore it.
Right about the time my mother died, my son was transitioning into kindergarten. It was a horrific year. He had been suspended twice - yes, that's right, suspended, a kindergartner with a medical diagnosis - not once, but twice. (Who suspends five year olds from Kindergarten? Is it really to teach a lesson to kids with autism - who hate school and don't want to go anyway)? From pre-school through first grade he had been in six different schools, that is six settings filled with the stress of challenges and difficulties that couldn't be worked through. After two suspensions, after he was assaulted, tormented and mercilessly teased by classmates, after countless meetings and requests for better supports, and after the school district's refusal to acknowledge his medical diagnosis, boldly telling me they didn't even "see" autism in my son - (while at the same time unable to help him have a complete day of success at school without calling me to come pick him up), we chose to move our son to another school district. I remember sending a bubbly, bright, happy little boy to kindergarten. He became fearful and anxious as a result of the horrible experiences he had while in the care of "professionals" I trusted to meet his needs. To this day he continues to struggle with fear and anxiety in group settings. I am learning that my anger doesn't just go away by not acknowledging it.
We tried to foster and adopt two children who were brothers. We kept them in our home for nearly six months, and fell completely in love with them. It turned into a nightmare for so many reasons that would take too long to write about. They both had issues that were much more severe than my son's. I was advocating for them and trying to get them supports and appropriate medical help, when Malachi suddenly began regressing. Three young and active boys with significant behavioral challenges ages 3, 5, and 7 (at that time) was just more than this mom approaching fifty could handle. It was heartbreaking. I've never been a quitter, and hate admitting I can't do something, but this was something I just couldn't do, so I had to let these precious boys go. We had only wanted to adopt one other child. We didn't mind if they had some challenges, but we couldn't take other children in with issues that were going to put Malachi at risk. We would love to have another child, but that dream has been dashed.
Right about that time, I was diagnosed with a Huerthle Cell Tumor on my thyroid. It's a rare tumor, and because there is so little known about it, the only way to determine if it was cancerous was to remove it for evaluation. I underwent a bi-lateral thryoidectomy, removing the side that contained the tumor. I was supposed to take it easy and rest afterwards, but didn't have the luxury of taking it easy, and complications arose as a result. Two weeks later I collapsed and wound up back in the hospital. Thankfully, the tumor turned out not to be cancerous. However, now I only have half of a thyroid and must take medication for the rest of my life.
Just in the last couple of months my son has been restrained three times at school. I don't know how other parents feel when they get the news that their child had to be restrained at school, but it makes my heart stop beating. I feel like I can't breathe, my head hurts and I cry. Images flash through my mind and it's unbearable. After asking questions and putting all the information together, I believed each of those restraints could have been avoided. There are no perfect schools, or perfect teachers, and we as parents are so imperfect ourselves. Yet we want the best for our kids. We want everything to be perfect for them. Success at school for my son is always a work in progress, and I'm just thankful that the staff include me in discussions about solutions for his challenges. He has come a long way in three years in this wonderful school district, and for that I am grateful. I accept that there will be bumps in the road that we will all have to come together to talk about, and that's just how it is. I appreciate that the staff who work with my son also love him and care about him, and want the best for him. Knowing this makes it easier for me to deal with news of restraints or other issues. However, it doesn't take away the pain of the reality that he has them.
Another painful stressor that I have been dealing with is the fact that my son was put out of a social group in the community a few weeks ago. It's a painful and hopeless feeling to be asked to take your child and leave a social group led by professional autism experts. The professionals running it didn't think he was ready to be in a group setting...and that he needs more one on one work. I question everything I am told. I did not agree. I have learned that the professionals are not always right. While the experts are great and wonderful, and an important part of my son's progress, sometimes they are wrong. They don't always see the big picture of his life. They only get snapshots of him at any given time. That being said, I do not disregard professional advice lightly. There is one professional in my son's life who I am convinced could probably walk on water! She has known him for a long time though.
I had some hard questions for my son's school after that experience. If what they are doing with my son at school isn't translating into success for him outside the school, that's something we need to talk about. Thankfully, the folks at my son's school are wonderful to talk to, and anxious to help. They were as shocked as I was that he was put out of a social group run by an autism center...and felt quite the opposite, that he IS ready for a group setting...after all, where else can he learn these skills? I am torn between what the professionals at my son's school are saying, and what the professionals at the autism center are saying. Here I am, stuck in the middle with no easy solution. Frankly, I believe he can have success in any setting if the folks who work with him are willing to work with him. Success always takes a little more effort and extra time with my son, and sometimes it's hard work...and it comes in baby steps.
As much as I adore and love my son, I do realize he isn't one of the easier kids to work with. Everyone wants to work with the "easy" kids, the pleasant ones, the ones who can't or don't talk back, the ones who can be led around like little lambs. Sigh. Yeah, autism is not pretty sometimes. He is hard work, and I know that...welcome to my world. I live with him, he's my kid...yeah, I do know he is not an easy kid to work with. Public outings can be huge challenges...read some of my other posts! Other kids with autism don't want to play with my son, but I get it. I'm not angry about that, I understand, but it's painful, very painful to realize that. However, once you get to know my son, and figure out how to get through the autism, there's a great and adorable kid, who is so lovable and fun. My son needs friends. He desperately needs opportunities to be in social settings where he can work on developing and practicing social skills. I feel so much pressure to find these opportunities for him, but am so discouraged right now because it seems there is no long term solution for him that my insurance or a state funded program will pay for.
I've been dealing with a lot of disappointment lately. Disappointment doesn't just go away on it's own if you ignore it. My son's challenges isolate our family. There are very few places we can go. They hinder us from going to church, to stores, to gatherings, to parks, just about anywhere. Attempts to go to these places is challenging and stressful, and rarely a fun or relaxing time - and usually leave me feeling exhausted afterwards. I feel an incredible loneliness sometimes. Contact with other human beings is something we all need! The parents and other wonderful people I meet through SWAN have no idea how much they support me. I have met some pretty amazing moms and dads, and though we don't see each other that often, when we do get together, it's great. We get it, we so get what we're all going through. There's no pretense necessary, no formalities, we just pick up where we left off. I love how when you meet another parent with a child on the spectrum, there is already a strong bond that is there. There is no need for so many formalities because you already have so much in common!
Sorry, I'm really rambling here...it's time to wind this novella down. So why am I sharing all of this? This is some really personal stuff, and really, who cares? Who isn't going through something? There are parents everywhere living under enormous pressure, living stressful lives, filled with stress that never lets up. I'm not sharing anything here that is new, or bizarre, or out there. I'm not the only one going through these kinds of struggles and disappointments. I don't want sympathy or pity, I will make it. I serve an awesome God who I know will see me through. I just want to encourage other parents who might be feeling like they don't have time - or don't want to take the time to take care of themselves. Stress is there, every day. As long as we're alive we will have to deal with the things that come our way. We each have a path to travel, and a load to carry while we journey to get where we're going. Personally, I want to be able to finish the journey, and be around for my son. I want to feel good and have energy while I'm doing it! I want to live the life that God gave me. He didn't intend for me to live at the bottom of a pit. He didn't intend for me to struggle under a heavy load of sorrow, loneliness, care, and anxiety. He certainly didn't intend for me to feel this lousy.
Change is ahead for me. Big changes in the way I live and take care of myself. I took a trip to see a holistic practitioner we used to visit when we lived in the Corpus Christi area. He's awesome. It was an incredibly enlightening trip. While stress was definitely a contributing factor to my visit to the ER, there are also some physical causes that are contributing to what I have been experiencing as well that the tests the traditional medical doctors performed did not find. I intend to take the information Dr. Wayne discovered through his testing to my regular family doctor to keep him in the loop. With my thyroid and the medication I take for it, I definitely want to be under the supervision of a medical doctor while taking supplements and dieting. In the next few blog posts, I'll be sharing my journey to wellness with you. I'll also share more details about my visit with Dr. Wayne and the diet plan and supplement regimen he recommended for me. In the mean time, I hope you will make time to take time to take care of you. That doesn't have to include a visit to a wellness doctor. It doesn't mean you have to take supplements or herbs, or go on a special diet. Sometimes it just means slow down and take it easy. Take a break, go for a walk, or call a friend. Do something to get your mind off things for awhile. You deserve it!
Love and Blessings,
Annette
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