It has been awhile since I have posted. I hope you all understand. Life has been very different and difficult with just life. I am hoping to bring up some recent ways of survival when possible.
Thanks so much for stopping by
Lynne
The Journey
The story of a parent who has an autistic, bi-polar, OCD mentally ill child.
Friday, July 6, 2012
Monday, January 9, 2012
The Comfort of Routine
Today, it's Monday, and the comfort of an established routine has been back in place. The Christmas decorations are down, well, all except the wreaths on the doors which I forgot. The college son is back to school and the remnants of him living in the den are not evident anymore. At breakfast we sat and regrouped about what was needed for daily tasks. My son and I discussed my upcoming new employment from the house in a month or so and how that would affect him. Forecasting is so ever present in our house. We found out Sunday, that my husband sometimes isn't as good as he should be about forecasting the details that might set my son off. But we work as a team and we made an adjustment to the day's plans and went home after lunch. Now, we usually don't eat out anymore on Sundays. Besides the expense for our family, the noise, crowds, and unfamiliar people cause my son unnecessary stress. Yesterday we went to an earlier church and were able to go eat and get out before the huge crowds. It's amazing to think about all the things we do to help him cope with life. Some might think it's catering to him, but in reality, we are still coming out of a very difficult season and have a long way to go to settle down. Every thing we do affects him.
My suggestions after the holidays are as follows. Get everything back to "normal" or routine as soon as possible. We had to wait until his brother was back at college and not living in the den. But as soon as we returned home from taking him, the den was cleaned up and looking like it usually looks. This sounds so simple. But it was huge for my son to get up the next morning to find that room back in order and feeling like he was used to. It made the adjustment feel better.
I also moved the fifth chair out of the dining room so there were only four at the table for dinner that night. Since we eat around the table and always have, it made missing my oldest who had sat there for the past 4 weeks easier on all of us, but especially my son.
I find my journey a learning experience almost everyday. I hope that sharing what I discover will help others who are walking a similar journey. Being a parent of a mentally ill, autistic child has great challenges and great rewards. He continues to help me be the best person I can be. He makes me laugh and when he overcomes, we all celebrate with him! It's so much fun.
Thanks for stopping by,
Lynne
My suggestions after the holidays are as follows. Get everything back to "normal" or routine as soon as possible. We had to wait until his brother was back at college and not living in the den. But as soon as we returned home from taking him, the den was cleaned up and looking like it usually looks. This sounds so simple. But it was huge for my son to get up the next morning to find that room back in order and feeling like he was used to. It made the adjustment feel better.
I also moved the fifth chair out of the dining room so there were only four at the table for dinner that night. Since we eat around the table and always have, it made missing my oldest who had sat there for the past 4 weeks easier on all of us, but especially my son.
I find my journey a learning experience almost everyday. I hope that sharing what I discover will help others who are walking a similar journey. Being a parent of a mentally ill, autistic child has great challenges and great rewards. He continues to help me be the best person I can be. He makes me laugh and when he overcomes, we all celebrate with him! It's so much fun.
Thanks for stopping by,
Lynne
Monday, January 2, 2012
It's a new year
I just wanted to say, it's been a season. The holidays, the family, mood swings, unfamiliar events and situations. It's been a season that I have mentioned before. The one you feel like you know nothing. The times you feel like you are taking 4 steps forward only to take 5 steps back. You pull out all your tools in the toolbox to help your child cope with it all, but nothing seems to work. The sessions at therapy become difficult and seems to cause more harm then good. The world around you continues not to "get" the realness of what daily life is like.
It knocks the wind out of you. It makes you isolate, hyper focus, retreat so you can survive. During this time, communication has been limited. No Christmas cards were sent out, gifts were simple, days have been spent creating ways to keep him going and engaged to lessen the stress of the onslaught of multiple illness related symptoms.
Although the holidays, change of routine, schedule, etc is about to be over, then there is the adjustment of losing the big brother back to college. This is always difficult. There is also new symptoms which are being monitored. Honestly, my heart is saying, "Really"
So, here's the reality, I told you I am sharing the good, the bad, and the ugly. I honestly don't considered any of it literally ugly, for I have a God, a personally involved real power, who walks us through, both me, my husband and my son and other children. He holds us, carries us when necessary, and even though it might feel ugly, with HIS perspective, it's never really is.
We are blessed. God has chosen us. All of our children are precious gifts with uniqueness that will and do affect this world for Him.
Thanks for stopping by,
I will attempt to harvest communication to continue to encourage those walking a similar journey.
Lynne
It knocks the wind out of you. It makes you isolate, hyper focus, retreat so you can survive. During this time, communication has been limited. No Christmas cards were sent out, gifts were simple, days have been spent creating ways to keep him going and engaged to lessen the stress of the onslaught of multiple illness related symptoms.
Although the holidays, change of routine, schedule, etc is about to be over, then there is the adjustment of losing the big brother back to college. This is always difficult. There is also new symptoms which are being monitored. Honestly, my heart is saying, "Really"
So, here's the reality, I told you I am sharing the good, the bad, and the ugly. I honestly don't considered any of it literally ugly, for I have a God, a personally involved real power, who walks us through, both me, my husband and my son and other children. He holds us, carries us when necessary, and even though it might feel ugly, with HIS perspective, it's never really is.
We are blessed. God has chosen us. All of our children are precious gifts with uniqueness that will and do affect this world for Him.
Thanks for stopping by,
I will attempt to harvest communication to continue to encourage those walking a similar journey.
Lynne
Saturday, November 19, 2011
How to handle the Holidays-October
They can be real tricky for a family with an autistic or mentally ill child. So many things change. Most of the year, the holidays are just one day or week-end celebrations and can be manipulated to be handled. You will need to be aware of environment, people, traveling, etc. When it comes to the fall, however, most of the holidays are drawn out for days, weeks and even months!
Halloween is way too long in my opinion. It seems the season gets longer every year. It still poses problems in my house. The constant bombardment of images, scary faces, cob webs, are everywhere and really affect children with autism. Unfamiliar smells, sights, sensory usually means sensory overload can happen anywhere. This makes simple trips to grocery store or even the dentist challenging for parents. Then the candy, the temptations, the food coloring, the sugar messes up things, too. People without special needs children rarely get that these seasons pose extreme upheaval in our households.
There have been adjustments we have made throughout our journey. Some of them worked, some didn't. It's the old "try it and see" thing. Here are a few survival tips from me.
1) Avoid everything you can! If at all possible, don't go through the costume aisle in the grocery store when your child is with you. Don't go to the party store with them, either.
2) Forecast, forecast, FORECAST... When retailers pull out the decorations, forecast what they might see different in the stores before you go and that is just pretend. When the time comes, explain the costumes, etc. This can be such a scary time for children. Most therapists work on preparing their clients, but even the older ones need reminded. I still have to forecast to my older son.
Here are some other ideas:
Plan the party at your house.
Give other things than candy, toys, games, etc.
We usually have to avoid the large parties or gatherings, so we plan a family movie night with a special
movie.
The change of daylight savings, the adjustment of school, siblings leaving for college, change of the weather all gathers in my son's emotional state in October. The bombardment of Halloween usually sets him completely out of sync. We have to handle the stress of this season very carefully.
I will be sharing more about the holidays in the days to come as time allows. Yes, we are out of October, but into another season of difficulties. Be patient with me, for I am a mother on a journey with a special needs son who demands much of my effort and time.
Thanks for stopping by,
Lynne
Halloween is way too long in my opinion. It seems the season gets longer every year. It still poses problems in my house. The constant bombardment of images, scary faces, cob webs, are everywhere and really affect children with autism. Unfamiliar smells, sights, sensory usually means sensory overload can happen anywhere. This makes simple trips to grocery store or even the dentist challenging for parents. Then the candy, the temptations, the food coloring, the sugar messes up things, too. People without special needs children rarely get that these seasons pose extreme upheaval in our households.
There have been adjustments we have made throughout our journey. Some of them worked, some didn't. It's the old "try it and see" thing. Here are a few survival tips from me.
1) Avoid everything you can! If at all possible, don't go through the costume aisle in the grocery store when your child is with you. Don't go to the party store with them, either.
2) Forecast, forecast, FORECAST... When retailers pull out the decorations, forecast what they might see different in the stores before you go and that is just pretend. When the time comes, explain the costumes, etc. This can be such a scary time for children. Most therapists work on preparing their clients, but even the older ones need reminded. I still have to forecast to my older son.
Here are some other ideas:
Plan the party at your house.
Give other things than candy, toys, games, etc.
We usually have to avoid the large parties or gatherings, so we plan a family movie night with a special
movie.
The change of daylight savings, the adjustment of school, siblings leaving for college, change of the weather all gathers in my son's emotional state in October. The bombardment of Halloween usually sets him completely out of sync. We have to handle the stress of this season very carefully.
I will be sharing more about the holidays in the days to come as time allows. Yes, we are out of October, but into another season of difficulties. Be patient with me, for I am a mother on a journey with a special needs son who demands much of my effort and time.
Thanks for stopping by,
Lynne
Tuesday, November 15, 2011
Sharing the Reality
I often say, "reality smacked me in the face and it stings". Well, here's the thing. I started this blog a couple of months ago with full force. Reality is, life hasn't been all that smooth. I wanted to share what I knew about our experiences but didn't have anything to share that I knew recently. What I am trying to say is there will be days when you feel like you know nothing. No strategy, no coping skills, no tool to help your child through. Been there, done that, bought the T-shirt. Even for us after years of learning new strategies, new skills, new techniques, we still have those moments when I have no clue what to do! We are there, now.
So what do you do. You just start trying everything you know. When you have tried something and it fails, try something else. For us, we lose functioning capabilities when lithium is too high. That means I give lots and lots of verbal cues to him throughout the day just to get him through. (He is 19, people.) I make sure he hydrates, exercises, and doesn't have any other health issues like a cold. Then, I notify his doctor and call for a blood level on his lithium. These are the times when I have to be careful of his safety. If he is helping out in the kitchen, he could cut himself. While walking in public, he is usually oblivious to cars or people around him. He stays in a fog. Everything is difficult. Simple tasks and everyday routine become difficult for him. These are the times when I feel like I don't know enough on how to help him.
There is another time when I doubt myself. When a doctor says, "It's simple, you just..." Those are words that a parent who is living day to day with incredibly difficult situations that can make you feel like you don't know anything. It happened in therapy recently with me. I felt my mind start to questions if I had missed something. Could it be that simple, just.... Come on people. They don't live in your house every moment that you do. They can offer some great tools and techniques and even wisdom, but you are doing the every day life with your child. You see more than anyone what is happening, when it happens and even gaining insight as to why. My advice, take those comments " you just...", evaluate them, try them, but don't let them sink into your emotions or heart and cause you to think you don't know anything. You are learning everyday what it takes to help your child to function at a higher level. Some days you make strides, some days you don't. That's just the way it is.
Reality is what you deal with. There will be days it smacks you in the face and it stings. You miss things you wanted to do, you lose sleep, you have to change your schedule and the list goes on.
My reality is I have a great family, great parental and sibling support, and most of all the help of my Heavenly Father to see me through every step I take. So, it's okay I don't know what I am doing, for He does!
Thanks for stopping by,
Lynne
So what do you do. You just start trying everything you know. When you have tried something and it fails, try something else. For us, we lose functioning capabilities when lithium is too high. That means I give lots and lots of verbal cues to him throughout the day just to get him through. (He is 19, people.) I make sure he hydrates, exercises, and doesn't have any other health issues like a cold. Then, I notify his doctor and call for a blood level on his lithium. These are the times when I have to be careful of his safety. If he is helping out in the kitchen, he could cut himself. While walking in public, he is usually oblivious to cars or people around him. He stays in a fog. Everything is difficult. Simple tasks and everyday routine become difficult for him. These are the times when I feel like I don't know enough on how to help him.
There is another time when I doubt myself. When a doctor says, "It's simple, you just..." Those are words that a parent who is living day to day with incredibly difficult situations that can make you feel like you don't know anything. It happened in therapy recently with me. I felt my mind start to questions if I had missed something. Could it be that simple, just.... Come on people. They don't live in your house every moment that you do. They can offer some great tools and techniques and even wisdom, but you are doing the every day life with your child. You see more than anyone what is happening, when it happens and even gaining insight as to why. My advice, take those comments " you just...", evaluate them, try them, but don't let them sink into your emotions or heart and cause you to think you don't know anything. You are learning everyday what it takes to help your child to function at a higher level. Some days you make strides, some days you don't. That's just the way it is.
Reality is what you deal with. There will be days it smacks you in the face and it stings. You miss things you wanted to do, you lose sleep, you have to change your schedule and the list goes on.
My reality is I have a great family, great parental and sibling support, and most of all the help of my Heavenly Father to see me through every step I take. So, it's okay I don't know what I am doing, for He does!
Thanks for stopping by,
Lynne
Wednesday, November 9, 2011
Change of Seasons
I know it sounds weird, but the change of seasons affect autistic children. Mine is especially throw off by the daylight savings change in the fall. It means darkness falls much earlier, which means anxiety grows more daily. He hates the dark, all of it, everything from a room, a basement or even the outside. Getting home before dark this time of year is much more difficult. Have I found ways to help this, not really. We still have to leave a light on at night, he doesn't leave the house after dark. He might sit out side at a bon fire, but it's certainly not without much stress for him. Even if it just got dark, he won't go out to the car.
The other thing that happens is his mood becomes much more depressed. My doctor says that the sunshine has a part to play in this. A couple of winters ago we acquired and invested in a light therapy box with help. My son would sit under it for a bit everyday to replace the sunshine he was missing. It worked, somewhat. The timing of when and how much takes a bit to play with, but it's an idea for you to mention to your doctor is you are struggling with some depressive issues during the winter.
The last thing that causes problems in the fall is sickness. Although we are very careful washing our hands, it's cold and flu season. Our world changes so quickly if my son gets sick. Every effort it takes for him to function on any given day, is redirected to handling a runny nose, congestion or a sore throat. It means much more drama, situations, and stress. Most of the time it's simple stuff that throws him for a loop. I drag him to his appointments to keep things moving in the right direction, but let's just say life takes on much more effort for us both.
I know this is a short blog, however, it is the change of seasons. My life has changed with the time change and my son has a cold. So, yes, life is more difficult and delicate. That's just the way it is.
I draw strength from heaven. I know it's a season and I just move on. This too will pass.
These are the seasons that require the use of those gifts of respites I spoke of recently. Be sure to check out my blog on living without the chaos if you don't understand.
Thanks for stopping by,
Lynne
The other thing that happens is his mood becomes much more depressed. My doctor says that the sunshine has a part to play in this. A couple of winters ago we acquired and invested in a light therapy box with help. My son would sit under it for a bit everyday to replace the sunshine he was missing. It worked, somewhat. The timing of when and how much takes a bit to play with, but it's an idea for you to mention to your doctor is you are struggling with some depressive issues during the winter.
The last thing that causes problems in the fall is sickness. Although we are very careful washing our hands, it's cold and flu season. Our world changes so quickly if my son gets sick. Every effort it takes for him to function on any given day, is redirected to handling a runny nose, congestion or a sore throat. It means much more drama, situations, and stress. Most of the time it's simple stuff that throws him for a loop. I drag him to his appointments to keep things moving in the right direction, but let's just say life takes on much more effort for us both.
I know this is a short blog, however, it is the change of seasons. My life has changed with the time change and my son has a cold. So, yes, life is more difficult and delicate. That's just the way it is.
I draw strength from heaven. I know it's a season and I just move on. This too will pass.
These are the seasons that require the use of those gifts of respites I spoke of recently. Be sure to check out my blog on living without the chaos if you don't understand.
Thanks for stopping by,
Lynne
Monday, November 7, 2011
Learning to live WITHOUT the chaos
It sounds strange, but this is a problem for me. After years of chaos, incredible stress, and unpredictable situations with my son, I finally have realized that learning to live even a day or a few days without that chaos is difficult. It happened to me just the other day. I had just made an unexpected & unplanned trip to Iowa, 650 miles one way, with both children due to my dad having a severe accident. Within 10 days, I drove 2 1/2 days, took care of both parents, their home, put meals in the freezer, helped my sister to prep their house with everything they needed, visited with most of my family, and took care of my own children. By the end of the week, I was spending every extra time I had with my son to make sure he was making it through this whirlwind successfully. After arriving home and crashing, I took a few days to catch my house up and make up a few appointments I had missed, buying groceries, and so on. I hadn't been home more than a week and a pastor spoke on getting out of the bleachers and getting into the fight. For some reason I immediately thought I wasn't doing enough and felt guilty. For instance, one day I feel asleep for a nap and slept almost 2 1/2 hours. I honestly felt guilt for that.
My mom is the reality check in my life when I get things messed up and we talk often. She is more aware of what I deal with on a daily basis, sometimes more than I am. I shared with her that I was feeling guilty and not doing enough. She reminded me how much effort it takes from me to keep my home running, especially when my husband is working so many hours right now. She also graciously reminded me how much effort it takes to keep my son functioning at any sense of normal level and how delicate that balance is. She knows it takes a slight routine change to set things awry and quick! I know this, too, but for some reason, when the chaos quiets and I get a gift of respite, my motor that is used to running fast and furious forgets how to idle down and relax and enjoy the respite.
This respite gift may come in not having too much to do in a day. My advice, don't go ahead and schedule something in that time; take a nap, read a book, take a walk, go shopping, take a long hot bath... You get my drift. For us, I am primary care-giver and it's just me and his dad usually 24/7. Most of the time we can handle it and live life fairly normal. We have seasons though, we aren't even a year away from the last one that lasted over 2 months, that we are literally on duty 24/7, sleeping in his room and constantly aware of where he is and what he is doing every minute, re-directing, calming, helping him get through a day.
If you are a parent of an autistic or mentally ill child you understand that it takes so little to upset them when life's routines are messed with. Something simple like a cold sends my son crashing into utter despair. If you are a care-giver, you should understand, too.
So today, I want to encourage you to learn to live every moment you are given of little to no chaos in your life. Accept it as a gift of respite. They are nuggets of gold that help you get through what is next. Believe me, there will be plenty more ahead that will require your motor to run non-stop. Please take this time and regain the strength, stamina, and courage you need to continue on your journey.
I pray if you need that gift of respite, you will soon find it. If you are in a gift of respite, I hope I have encouraged you to accept it as a rare gift. You deserve it.
Thanks for stopping by. Please feel free to share this blog with anyone on a similar journey. My hope is to encourage!
Lynne
My mom is the reality check in my life when I get things messed up and we talk often. She is more aware of what I deal with on a daily basis, sometimes more than I am. I shared with her that I was feeling guilty and not doing enough. She reminded me how much effort it takes from me to keep my home running, especially when my husband is working so many hours right now. She also graciously reminded me how much effort it takes to keep my son functioning at any sense of normal level and how delicate that balance is. She knows it takes a slight routine change to set things awry and quick! I know this, too, but for some reason, when the chaos quiets and I get a gift of respite, my motor that is used to running fast and furious forgets how to idle down and relax and enjoy the respite.
This respite gift may come in not having too much to do in a day. My advice, don't go ahead and schedule something in that time; take a nap, read a book, take a walk, go shopping, take a long hot bath... You get my drift. For us, I am primary care-giver and it's just me and his dad usually 24/7. Most of the time we can handle it and live life fairly normal. We have seasons though, we aren't even a year away from the last one that lasted over 2 months, that we are literally on duty 24/7, sleeping in his room and constantly aware of where he is and what he is doing every minute, re-directing, calming, helping him get through a day.
If you are a parent of an autistic or mentally ill child you understand that it takes so little to upset them when life's routines are messed with. Something simple like a cold sends my son crashing into utter despair. If you are a care-giver, you should understand, too.
So today, I want to encourage you to learn to live every moment you are given of little to no chaos in your life. Accept it as a gift of respite. They are nuggets of gold that help you get through what is next. Believe me, there will be plenty more ahead that will require your motor to run non-stop. Please take this time and regain the strength, stamina, and courage you need to continue on your journey.
I pray if you need that gift of respite, you will soon find it. If you are in a gift of respite, I hope I have encouraged you to accept it as a rare gift. You deserve it.
Thanks for stopping by. Please feel free to share this blog with anyone on a similar journey. My hope is to encourage!
Lynne
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