I have a hard time writing my blog when things are going well. I tend to write on the worst days, kind of like a form of therapy. But it makes it seem like there are no good days. To be quite honest we don't necessarily have "good" days. With our kids we tend to have absolutely fantastic days or absolutely awful days. There really is not a lot of in between. We live in a world of peaks and valleys.
The last few days have been peaks.
Shana has done very well at school the last couple days and she is excited about trying out for a solo part in the 5th grade play. I know without a doubt she has the voice to sing the part, but there is the little part of me that is nervous about her getting a "lead" role. It's not that I worry for her, I worry about whether on the day of the show she will be having a peak or valley day. If it's a peak day the production will go great and she will be excited and perform in the way I know she can. If it's a valley day, it could be very awful for her. Will I stop her from trying out? Absolutely not! If it's a valley day, we will pick up the pieces when it's all over and work hard to help her recover. If it's a peak day we will celebrate her success and enjoy the moment!
It's rare that both kids are having peak days at the same time. This week has been really nice. Hunter also has had a very good week and has caught up on the lessons he was behind in. We may even be done with all his work for the week by Thursday and can take Friday off! This is what works for him in virtual school. He doesn't have to slow down on the days he's excited and ready and wait for the rest of the class and he can take a day off when the work is done early. The fun thing is we may go to the museum or somewhere he likes to go and we can still count it as a "school" day. Can't beat that!
Today I'm not thinking of the things I'm tired of. Today is a peak day and I will cherish the time and enjoy some fun days with the kids. It's hard sometimes to enjoy the time, knowing that at any moment we can hit the next valley. But we have to. If we don't enjoy each moment of joy, I don't know how we would make it through.
Tuesday, September 21, 2010
Thursday, September 16, 2010
So Tired...
Today, I am so tired!
So tired of calls or emails from the school letting me know that my child has refused to do their work - again.
So tired of being hit, kicked, bit, scratched and having things thrown at me.
So tired of trying to remain calm and detached when all I want to do is engage.
So tired of trying to figure out what I have done wrong and am I being punished for it.
So tired of trying to figure out where I have gone wrong and why I can't fix it.
So tired of people telling me "God will never give you more than you can handle"
So tired of working so hard and seeming to make no progress.
So tired of wondering will my kids survive through their teen years.
So tired of trying to be the best mom I can be and still feeling like I'm failing miserably.
So tired of not being able to sleep because there is too much to do.
So tired of having migraines, back pain, foot pain and not having time to do anything about it.
So tired of feeling isolated from the world because most people don't understand or don't want to try.
So tired of trying new diets, meds, cleansers and anything else that "may" help.
So tired of wondering if we have made the right decisions, because nothing ever seems "right".
This list could go on for miles. I try not to think about these things most of the time. The problem is they are always there, they are exhausting and they are unrelenting in our lives. We can only keep trying and praying that we can pull through each day and maybe make a little progress. Most days the light at the end of the tunnel doesn't look too far away. Days like today there doesn't seem to be a light at all!
Anyone who thinks life with twice exceptional kids is not that bad, has never lived with a twice exceptional kid. The part that is so hard is most of the people who see our family only see the good side. They don't see behind the walls or even the day-to-day life that becomes so difficult at times. It's not everyday that we have a problem, but sometimes they seem to come in a rapid-fire fashion like a machine gun and you can't duck, hide or escape them. If it wasn't for the support of a few really good people who really "get" what we are going through I think we would fall apart completely.
Our lives feel an awful lot like the weather - calm, sunny and serene one moment and then a blizzard, hail storm or tornado the next. The best we can do is take cover and try to hold on for it to pass. Then we pick up the pieces and do it all over again the next day.
So tired of calls or emails from the school letting me know that my child has refused to do their work - again.
So tired of being hit, kicked, bit, scratched and having things thrown at me.
So tired of trying to remain calm and detached when all I want to do is engage.
So tired of trying to figure out what I have done wrong and am I being punished for it.
So tired of trying to figure out where I have gone wrong and why I can't fix it.
So tired of people telling me "God will never give you more than you can handle"
So tired of working so hard and seeming to make no progress.
So tired of wondering will my kids survive through their teen years.
So tired of trying to be the best mom I can be and still feeling like I'm failing miserably.
So tired of not being able to sleep because there is too much to do.
So tired of having migraines, back pain, foot pain and not having time to do anything about it.
So tired of feeling isolated from the world because most people don't understand or don't want to try.
So tired of trying new diets, meds, cleansers and anything else that "may" help.
So tired of wondering if we have made the right decisions, because nothing ever seems "right".
This list could go on for miles. I try not to think about these things most of the time. The problem is they are always there, they are exhausting and they are unrelenting in our lives. We can only keep trying and praying that we can pull through each day and maybe make a little progress. Most days the light at the end of the tunnel doesn't look too far away. Days like today there doesn't seem to be a light at all!
Anyone who thinks life with twice exceptional kids is not that bad, has never lived with a twice exceptional kid. The part that is so hard is most of the people who see our family only see the good side. They don't see behind the walls or even the day-to-day life that becomes so difficult at times. It's not everyday that we have a problem, but sometimes they seem to come in a rapid-fire fashion like a machine gun and you can't duck, hide or escape them. If it wasn't for the support of a few really good people who really "get" what we are going through I think we would fall apart completely.
Our lives feel an awful lot like the weather - calm, sunny and serene one moment and then a blizzard, hail storm or tornado the next. The best we can do is take cover and try to hold on for it to pass. Then we pick up the pieces and do it all over again the next day.
Tuesday, August 17, 2010
Solutions Not Excuses!
This has been a very tough week for me. I have been struggling with some emotions that I can't really explain or go into right now. It has made me think even more about having twice exceptional kids and things I need to help them learn so they can function in society without being a victim. I want them to be in control of their lives and not grow up thinking the world owes them something because God has blessed them with these unique gifts and challenges.
Everyday we struggle with our children in helping them to learn how to live in a world that they do not always understand. Most people looking at our children would never know they have any challenges. Yet, everyday we have to deal with situations that can potentially cause them major struggles. What seems very minor on the outside and most neurotypical people in society would not even notice, can be a major challenge for my kids.
Some examples:
- Loud music in a restaurant or at the movies
-- may cause sensory processing overload and lead to a meltdown
- A waitress asking them what they would like to eat or drink
--can cause anxiety if they are not ready and may lead to a minor or major meltdown
- A restaurant with lots of games and flashing lights
--may cause a meltdown due to over stimulation
- Another child in a restaurant, park, school or any other place that is being allowed to behave inappropriately
--can cause ours to model the behavior and they may not understand why it is okay for the other child
- Painting a room in a public place a very bright color
--may cause visual over stimulation
- A child at a park, school or other public place picking up a toy or book that belongs to one of my kids
--may cause them to become agitated and they may not read non-verbal cues from that child
These are just a few of the things we have struggled with and the list goes on and on. These things are very common in the general public and the kids will have to learn to deal with situations such as these every day. What has really caused me frustration this week is it has become clear to me that there are people who make the problem someone else's instead of finding a solution for themselves. I have told my children many times that I will not let them use their challenges as an excuse for bad behavior or as a crutch.
I want them both to learn that the world cannot always bend to them and that they need to make decisions and find solutions to better function day to day. They can't always ask the restaurant or theater to turn down the music, or have a meltdown when a waitress asks for their order. They don't have control over the flashing lights and games in a restaurant or what color the walls will be painted.
Since we became aware of their challenges we have always tried to find ways to help them whenever possible. We didn't do this by trying to change society, we did it by helping them to find their own solutions. We carry headphones to wear in loud environments or we teach the children to ask the waitress for another moment to make a decision. We have taught them to bring a book with them so if they are tempted to mimic other children in public they can choose to read their book instead. There are times that the environment does not allow a good solution, like the bright walls or flashing lights or games - so we choose not to visit those places.
I hope that as my children continue to grow and develop that they will begin to find ways to help themselves better fit into society and be able to be comfortable in all environments. If not, I hope they find ways to help themselves be able to participate better and ask for assistance when needed. I hope they never use their challenges as an excuse but always look at them as the gifts they are. In having these challenges they have been blessed in so many ways and using those gifts I pray they will find a way to become the solution for themselves!
Everyday we struggle with our children in helping them to learn how to live in a world that they do not always understand. Most people looking at our children would never know they have any challenges. Yet, everyday we have to deal with situations that can potentially cause them major struggles. What seems very minor on the outside and most neurotypical people in society would not even notice, can be a major challenge for my kids.
Some examples:
- Loud music in a restaurant or at the movies
-- may cause sensory processing overload and lead to a meltdown
- A waitress asking them what they would like to eat or drink
--can cause anxiety if they are not ready and may lead to a minor or major meltdown
- A restaurant with lots of games and flashing lights
--may cause a meltdown due to over stimulation
- Another child in a restaurant, park, school or any other place that is being allowed to behave inappropriately
--can cause ours to model the behavior and they may not understand why it is okay for the other child
- Painting a room in a public place a very bright color
--may cause visual over stimulation
- A child at a park, school or other public place picking up a toy or book that belongs to one of my kids
--may cause them to become agitated and they may not read non-verbal cues from that child
These are just a few of the things we have struggled with and the list goes on and on. These things are very common in the general public and the kids will have to learn to deal with situations such as these every day. What has really caused me frustration this week is it has become clear to me that there are people who make the problem someone else's instead of finding a solution for themselves. I have told my children many times that I will not let them use their challenges as an excuse for bad behavior or as a crutch.
I want them both to learn that the world cannot always bend to them and that they need to make decisions and find solutions to better function day to day. They can't always ask the restaurant or theater to turn down the music, or have a meltdown when a waitress asks for their order. They don't have control over the flashing lights and games in a restaurant or what color the walls will be painted.
Since we became aware of their challenges we have always tried to find ways to help them whenever possible. We didn't do this by trying to change society, we did it by helping them to find their own solutions. We carry headphones to wear in loud environments or we teach the children to ask the waitress for another moment to make a decision. We have taught them to bring a book with them so if they are tempted to mimic other children in public they can choose to read their book instead. There are times that the environment does not allow a good solution, like the bright walls or flashing lights or games - so we choose not to visit those places.
I hope that as my children continue to grow and develop that they will begin to find ways to help themselves better fit into society and be able to be comfortable in all environments. If not, I hope they find ways to help themselves be able to participate better and ask for assistance when needed. I hope they never use their challenges as an excuse but always look at them as the gifts they are. In having these challenges they have been blessed in so many ways and using those gifts I pray they will find a way to become the solution for themselves!
Saturday, August 14, 2010
Nervous Anticipation!
Many events being a parent of twice exceptional kids can lead to nervous anticipation. We never know what each day will bring. What is typically an exciting or fun day for most parents can be full of stress and agony for a parent of children with disabilities.
School is starting soon. For most parents this is a time of excitement and joy. We do have joy and excitement at the beginning of the school year, but we are also full of anxiety and nervous anticipation for what the new school year will bring. We have yet to have a relaxing simple school year. When we drop our kids off in the morning we are nervous picking them up in the afternoon, worried about what may or may not have happened at school.
Every school year we have been dealt some difficult situations, that I hope no other parent ever has to go through. We have had a teacher who refused to allow my daughter to use a certain type of crayon to help her not break the crayons. We had a little boy bully our son in preschool and the teachers would discipline Hunter for yelling when he got hit. My daughter was suspended for turning over a desk after being accused of "stealing" a piece of scotch tape. My son has been suspended so many times I can't even describe each instance (and he's only starting 2nd grade this year). My daughter was suspended after hitting another girl with a willow leaf, after being surrounded by 8-9 other girls teasing her. We've had principals that clearly did not want our children in their school. We have had district staff fight us over a diagnoses to the point we had to contact an attorney. We dread a phone call coming from the school.
In all that we have had a few very positive experiences. We had a wonderful Kindergarten teacher that saw that Hunter was a sweet boy even on his bad days. A teachers assistant that I think really loved Hunter and was truly sad when he left the school. A young teacher that found ways to help Shana keep her desk organized which helped her stay on track during the day. A principal that could take a potentially embarrassing situation and make it alright. A teacher that really saw the gifts in Hunter and helped him to finally feel happy at school again.
I have no idea what this year will bring. We have some big changes and it is very scary. Shana is a 5th grader and is excited to be a big kid in the school but at the same time is still often a lot like a little girl. We hope her year will be peaceful and fun. Hunter starts virtual school, something new and exciting, yet a little scary for us both at the same time.
As I pick up the final school supplies and clothes I think about how this year may be. Will this be the year that we finally enjoy the year. Is that even possible? This year feels different than the last few. Each of the other years we have started with IEP meetings and discussions over behavior plans. This is the first year that we are enjoying the back to school time and hoping for a year of fun, excitement, growth and joy!
School is starting soon. For most parents this is a time of excitement and joy. We do have joy and excitement at the beginning of the school year, but we are also full of anxiety and nervous anticipation for what the new school year will bring. We have yet to have a relaxing simple school year. When we drop our kids off in the morning we are nervous picking them up in the afternoon, worried about what may or may not have happened at school.
Every school year we have been dealt some difficult situations, that I hope no other parent ever has to go through. We have had a teacher who refused to allow my daughter to use a certain type of crayon to help her not break the crayons. We had a little boy bully our son in preschool and the teachers would discipline Hunter for yelling when he got hit. My daughter was suspended for turning over a desk after being accused of "stealing" a piece of scotch tape. My son has been suspended so many times I can't even describe each instance (and he's only starting 2nd grade this year). My daughter was suspended after hitting another girl with a willow leaf, after being surrounded by 8-9 other girls teasing her. We've had principals that clearly did not want our children in their school. We have had district staff fight us over a diagnoses to the point we had to contact an attorney. We dread a phone call coming from the school.
In all that we have had a few very positive experiences. We had a wonderful Kindergarten teacher that saw that Hunter was a sweet boy even on his bad days. A teachers assistant that I think really loved Hunter and was truly sad when he left the school. A young teacher that found ways to help Shana keep her desk organized which helped her stay on track during the day. A principal that could take a potentially embarrassing situation and make it alright. A teacher that really saw the gifts in Hunter and helped him to finally feel happy at school again.
I have no idea what this year will bring. We have some big changes and it is very scary. Shana is a 5th grader and is excited to be a big kid in the school but at the same time is still often a lot like a little girl. We hope her year will be peaceful and fun. Hunter starts virtual school, something new and exciting, yet a little scary for us both at the same time.
As I pick up the final school supplies and clothes I think about how this year may be. Will this be the year that we finally enjoy the year. Is that even possible? This year feels different than the last few. Each of the other years we have started with IEP meetings and discussions over behavior plans. This is the first year that we are enjoying the back to school time and hoping for a year of fun, excitement, growth and joy!
Tuesday, July 20, 2010
Constantly Changing!
All parents have experienced the ups and some downs of raising kids. We have all had days where everything seems to be falling apart and days where everything goes just fine. Most parents the down days are few and most days are filled with enjoyable times with their kids.
We do have a ton of fun with our kids. We love watching them explore and learn new things. We love to go do fun things: museums, parks, zoos etc. It's hard though because we never know on any given day whether we are going to have a up or down day. It's rare that both kids have up days on the same day. I know it sounds cynical to say that and I'm justing setting myself up for disaster but I've been dealing with this for 10 years and truly we cannot let down our guard and think things are just fine, because at any moment that can change.
There's a joke in Colorado, if you don't like the weather just wait five minutes and it will change. Having twice exceptional kids is much like this. Although sometimes the weather is nice and it changes for the worse. We can be outside playing with the kids and having an enjoyable time and then for little or no reason one of them will have a major meltdown over grass getting on their socks.
It's impossible to predict what will trigger a meltdown. What caused one today may have no affect on the child tomorrow. We have to be prepared to handle anywhere and anytime.
The last couple weeks have been much better then the night of our anniversary. The kids have fought and argued but more like typical children, nothing major. It's hard to just enjoy the moment and not think about when the next weather change but we always have to think about when the next meltdown will occur. For now, I will do my best to enjoy the calm and hope the storm stays away for a little while. We will be ready when it comes.
We do have a ton of fun with our kids. We love watching them explore and learn new things. We love to go do fun things: museums, parks, zoos etc. It's hard though because we never know on any given day whether we are going to have a up or down day. It's rare that both kids have up days on the same day. I know it sounds cynical to say that and I'm justing setting myself up for disaster but I've been dealing with this for 10 years and truly we cannot let down our guard and think things are just fine, because at any moment that can change.
There's a joke in Colorado, if you don't like the weather just wait five minutes and it will change. Having twice exceptional kids is much like this. Although sometimes the weather is nice and it changes for the worse. We can be outside playing with the kids and having an enjoyable time and then for little or no reason one of them will have a major meltdown over grass getting on their socks.
It's impossible to predict what will trigger a meltdown. What caused one today may have no affect on the child tomorrow. We have to be prepared to handle anywhere and anytime.
The last couple weeks have been much better then the night of our anniversary. The kids have fought and argued but more like typical children, nothing major. It's hard to just enjoy the moment and not think about when the next weather change but we always have to think about when the next meltdown will occur. For now, I will do my best to enjoy the calm and hope the storm stays away for a little while. We will be ready when it comes.
Monday, July 5, 2010
More than You Can Handle!
The next time a person tells me "God will never give you more than you can handle" I think I may just slap them. In all actuality it says God will never tempt you beyond what you can bear. I only say this because it's days like today that I truly feel God has given me more than I can handle.
Today is my 13th wedding anniversary. Thirteen years ago at this time we were celebrating with all of our family and friends. We dedicated our lives together in good times and bad, for better or worse till death do us part. I never would have thought that 13 years to the day we would be at one of the lowest points so far. Interestingly enough Pat and I seem to be doing okay considering everything we have been through, we are still together and we don't see ourselves spliting anytime soon. But we are definitely going through more challenges than most can imagine. Most couples in our shoes probably would have thrown in the towel years ago.
Tonight I am in tears as I think of all the areas of my life that have literally fallen apart before my eyes and I don't seem to see any end to the torment. I feel lost in the middle of the raging seas
with no life jacket or boat and the sharks are closing in. There are times the ocean will calm for moments and it seems peaceful and I start swimming for the shore but then the waves come crashing down with no warning or reason.
Pat and I went to a wonderful dinner tonight and although we did not talk much we did enjoy each others company. I was very distracted during dinner, because I was upset that I had not received a call from my mom at all wishing us a happy anniversary. Things have been strained between my mom and I and this just made it worse for me. Then on the way home we called to check on the kids and they were doing great. By the time we got there to get them, Hunter was having a meltdown. It took quite sometime to get him calmed down and it really pushed me past my breaking point.
I have spent time outside thinking, crying and praying to God. Thankfully God has provided us with each other. Pat and I have our difficulties but through and through we have been strong together and we know the kids need us to be together for them.
Today is my 13th wedding anniversary. Thirteen years ago at this time we were celebrating with all of our family and friends. We dedicated our lives together in good times and bad, for better or worse till death do us part. I never would have thought that 13 years to the day we would be at one of the lowest points so far. Interestingly enough Pat and I seem to be doing okay considering everything we have been through, we are still together and we don't see ourselves spliting anytime soon. But we are definitely going through more challenges than most can imagine. Most couples in our shoes probably would have thrown in the towel years ago.
Tonight I am in tears as I think of all the areas of my life that have literally fallen apart before my eyes and I don't seem to see any end to the torment. I feel lost in the middle of the raging seas
with no life jacket or boat and the sharks are closing in. There are times the ocean will calm for moments and it seems peaceful and I start swimming for the shore but then the waves come crashing down with no warning or reason.
Pat and I went to a wonderful dinner tonight and although we did not talk much we did enjoy each others company. I was very distracted during dinner, because I was upset that I had not received a call from my mom at all wishing us a happy anniversary. Things have been strained between my mom and I and this just made it worse for me. Then on the way home we called to check on the kids and they were doing great. By the time we got there to get them, Hunter was having a meltdown. It took quite sometime to get him calmed down and it really pushed me past my breaking point.
I have spent time outside thinking, crying and praying to God. Thankfully God has provided us with each other. Pat and I have our difficulties but through and through we have been strong together and we know the kids need us to be together for them.
Tuesday, June 8, 2010
Try Not to Stare!
How many times have you been out somewhere and seen a child misbehaving and thought to yourself, "wow, those parents have no control of that child". Do you stare? Do you whisper to other people about it? Do you go so far as to say something to the parent of the child?
We have experienced all of these at some point with Hunter and Shana. We do discipline our children, probably more often than the parents being critical of our parenting. We have read books, tried many programs and nothing seemed to help. When the kids were finally diagnosed with Asperger's and PDD-NOS it helped us look at the situation a little differently. As i mentioned before we still discipline and do everything we can to help our children. This does not always work as our children can become very physical and we have to protect them and ourselves. We do everything we can to keep them safe and ignore the stares and under the breath comments from other parents.
Now I want to explain what these meltdowns entail, this is not your typical temper tantrum or fit a child might have, these are scary and dangerous meltdowns. This is not a kid who has not been taught to behave properly or is tired or just trying to get their way.
They will often start with something not going the way Hunter or Shana expect it too. This may look like a typical child not getting their way. However, this is the point where if we are lucky we may be able to solve the problem before it goes any further, but many times this small window closes too quickly. This happens most often with Hunter and his doctor, his teacher and we feel that what happens is the initial trigger is a typical problem for a child his age, but he gets so frustrated so quickly that he loses control and cannot regain it without completely wearing himself (and usually those around him) out. During the time he is out of control he won't respond to talking and cannot control his emotions. He will kick, hit, bite, scratch, pull hair, throw things, scream and anything else you can think of. It can be terrifying and frustrating even for the most calm adult. We often have to restrain him in a "basket hold" in order to keep him and anyone around him safe.
We have had meltdowns everywhere: grocery store, swimming pool, Disney World, parks, zoo, museum, library, clothing stores and anywhere else we have been.
In Disney World in January, Hunter had a major meltdown in the middle of Hollywood Studios. We were at the back of the park and had no way to get out. Grandma was with us and sat with Shana off to the side and made sure people didn't interfere. We had to restrain Hunter in a basket hold and work to calm him down. People stared, made rude comments and my mom said that one walked back a few times, she felt they were trying to see if we were hurting him. Thankfully, he must have seen we are very careful and only hold him to keep everyone safe.
At a pool Shana had a meltdown when her googles weren't working right. The teacher made her get out of the pool. She was crying and upset, I tried to get her to leave the pool area but she was clearly not hearing me and was getting out of control. We were in a corner and I was talking to her trying to calm her when another parent came up to me, my initial thought was she was going to offer help. Instead, she said that Shana's crying was upsetting her child and was making his swimming ineffective. I told her that both of my children had disabilities and that if her son (who was in Hunter's class) was unable to swim while a child had a meltdown that she should move him to another class because Hunter was likely to have a meltdown worse than Shana's at any time. We ended up changing classes and then after Hunter had a meltdown in the changing area and I heard more comments about his behavior, at this point I had heard and seen enough and we withdrew from the school.
The next time you are somewhere and a child is having a meltdown or temper tantrum, try to resist the urge to stare or comment. Everyone thinks they know exactly what the problem is and it's not always the case. Ask if the parent need any help, especially if they have a sibling with them, Shana will either be scared or continue talking to me like nothing is going on, which can be frustrating. Ask them if you can call anyone or even offer to help get them out of the public area to limit the embarrassment.
We have experienced all of these at some point with Hunter and Shana. We do discipline our children, probably more often than the parents being critical of our parenting. We have read books, tried many programs and nothing seemed to help. When the kids were finally diagnosed with Asperger's and PDD-NOS it helped us look at the situation a little differently. As i mentioned before we still discipline and do everything we can to help our children. This does not always work as our children can become very physical and we have to protect them and ourselves. We do everything we can to keep them safe and ignore the stares and under the breath comments from other parents.
Now I want to explain what these meltdowns entail, this is not your typical temper tantrum or fit a child might have, these are scary and dangerous meltdowns. This is not a kid who has not been taught to behave properly or is tired or just trying to get their way.
They will often start with something not going the way Hunter or Shana expect it too. This may look like a typical child not getting their way. However, this is the point where if we are lucky we may be able to solve the problem before it goes any further, but many times this small window closes too quickly. This happens most often with Hunter and his doctor, his teacher and we feel that what happens is the initial trigger is a typical problem for a child his age, but he gets so frustrated so quickly that he loses control and cannot regain it without completely wearing himself (and usually those around him) out. During the time he is out of control he won't respond to talking and cannot control his emotions. He will kick, hit, bite, scratch, pull hair, throw things, scream and anything else you can think of. It can be terrifying and frustrating even for the most calm adult. We often have to restrain him in a "basket hold" in order to keep him and anyone around him safe.
We have had meltdowns everywhere: grocery store, swimming pool, Disney World, parks, zoo, museum, library, clothing stores and anywhere else we have been.
In Disney World in January, Hunter had a major meltdown in the middle of Hollywood Studios. We were at the back of the park and had no way to get out. Grandma was with us and sat with Shana off to the side and made sure people didn't interfere. We had to restrain Hunter in a basket hold and work to calm him down. People stared, made rude comments and my mom said that one walked back a few times, she felt they were trying to see if we were hurting him. Thankfully, he must have seen we are very careful and only hold him to keep everyone safe.
At a pool Shana had a meltdown when her googles weren't working right. The teacher made her get out of the pool. She was crying and upset, I tried to get her to leave the pool area but she was clearly not hearing me and was getting out of control. We were in a corner and I was talking to her trying to calm her when another parent came up to me, my initial thought was she was going to offer help. Instead, she said that Shana's crying was upsetting her child and was making his swimming ineffective. I told her that both of my children had disabilities and that if her son (who was in Hunter's class) was unable to swim while a child had a meltdown that she should move him to another class because Hunter was likely to have a meltdown worse than Shana's at any time. We ended up changing classes and then after Hunter had a meltdown in the changing area and I heard more comments about his behavior, at this point I had heard and seen enough and we withdrew from the school.
The next time you are somewhere and a child is having a meltdown or temper tantrum, try to resist the urge to stare or comment. Everyone thinks they know exactly what the problem is and it's not always the case. Ask if the parent need any help, especially if they have a sibling with them, Shana will either be scared or continue talking to me like nothing is going on, which can be frustrating. Ask them if you can call anyone or even offer to help get them out of the public area to limit the embarrassment.
Sunday, May 16, 2010
Happy 10th Birthday Shana!
I remember going in to the hospital everyday (usually two or three times a day) and changing her diaper and getting her weighed. She was a little sweet bundle of joy. I would change her clothes daily. She was called the best dressed baby in the NICU by one of the nurses and the doctors liked to see what new outfit I had for her. It was not easy dressing her around all of her leads and tubes but I felt she was my daughter and therefore I treated her as such. I wanted her to look beautiful in the blandness of the NICU. I wanted the world to know that even though she had yet to leave the hospital she was going to be cared for.
The day Shana was born, Daddy heard the song I Hope You Dance by Lee Ann Womack on the radio on his way to the hospital. It was the day the song was released and held so much hope in it. Daddy dubbed it Shana's song and it has been ever since. Shana now listens to it on her iPod shuffle and sings it proudly. In school they analyzed the song as part of music class and Shana was so excited to say it was "her song". The words meant so much as I held her in that NICU, some very literally at the time and with hope for the future:
I hope you never lose your sense of wonder
Get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance... I hope you dance
To think of never taking a single breath for granted while your baby is in the hospital on a ventilator unable to breath on their own, or unable to eat without the food being pushed in through a tube. Knowing that had my water broke 12 hours later, we would have been driving home from Albuquerque and would have been miles from the hospital and she may not have survived. God made things happen to keep our baby safe and we will never take them for granted.
There is one other part that hits me today it is sung in the background as Lee Ann sings the I hope you dance part:
Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.
I do wonder where those years have gone, it seems like only yesterday we started this journey. We never expected the challenges we have been given, but at the same time our children are so energetic and full of life. Everyone thinks their child can change the world, and everyone should have such confidence and hope in their children. I look at what Shana has been through in the last 10 years and I know that whatever she brings to the world will be a wonderful gift.
On Shana's 10th birthday pray for her to always choose to dance!
Tuesday, May 11, 2010
Feeding Therapy
Have you ever thought about how you eat? Not using your fork or spoon, but how we know how to eat? I had never given eating a second thought. It's something we just do. We put food in our mouths chew, swallow and get the nourishment we need. It seems so simple, doesn't it?
Well, when Shana was 15 months old and still unable to eat anything thicker than yogurt without gagging and vomiting, it seemed that there was something wrong. Our pediatrician referred us to a feeding clinic (I never knew such a place existed). We made an appointment for the earliest date, 3 months later.
During this time Shana started refusing to eat baby food. Who could blame her, usually by the time you are 18 months you are eating many regular foods in cut up pieces. The food has salt and flavor, unlike the bland baby food. By the time we went to the feeding clinic Shana would only eat Safeway brand yogurt and milk. She was still gaining weight as she should but it took a lot of yogurt and milk to keep her going.
When we arrived at the feeding clinic with Shana we were taken to a room with a table facing a mirror, we knew the staff was watching us. They did this because having a herd of people come watch your child eat would be a little scary for the child. We fed her the foods she could eat and then some things she struggled with. At 18 months the foods she struggled with were pretty much everything.
After observing then the really interesting part started. The doctor came in and spent over an hour explaining to us exactly how we eat and how difficult it really is. She started with showing us how Shana had a hard time sitting up in the seat and leaned to one side on her arm to prop herself up. This made it difficult to eat because as the doctor so eloquently explained "how can you think about chewing when you feel like you may fall on your head". We got pillow to prop her up and this was the start.
We then learned that what we had called daintiness was actually a problem. Shana hated to touch anything messy, even her first birthday cake she poked at with one finger to get a tiny bit of frosting. This we found out was tactile defensiveness. She didn't like the feel of the food on her hand, so she would touch as little of it as possible.
Did you know that your tongue is controlled by both sides of your brain? I had not thought about it but it makes sense. It's similar to your arms. Now the tricky part is to eat you have to be able to move your tongue from side to side. When you do that your brain has to tell both parts of your tongue to do opposite things. This was Shana's other problem. She didn't move the food in her mouth to the side as she chewed and then swallowed. She swallowed off her tongue and would gag. Try chewing up a saltine cracker, then before you swallow move the pieces to the center of your tongue and try to swallow, it's difficult to do.
These are a few of the things that led us into feeding therapy and we were also referred to Child Find the program for children with disabilities. After many other tests we were told Shana had mild sensory issues, speech and motor delays.
Shana spent 10 months learning how to eat. Since she had already started refusing most foods, there was very little she could eat. We found out that when this happens she would eventually get tired of the yogurt she liked and stop eating it too. It's called a food jag, eventually without help she could have stopped eating entirely and would need to be fed though a belly-tube.
We had to get her trying new things and teach her how to chew and use her tongue. We started with pretzel rods to "explore" and we would always have to show her what to do and try to get her to mimic us. When we were in a restaurant, I'm pretty sure people thought we were crazy, going "chew, chew, chew" and playing with our food. We didn't care, it was working. Shana progressed from exploring to eating meltable foods. She would eat chickpea crackers called Papidi, puff Cheetos, Pirate Booty (puffed rice) and lots of other fun things. We shopped in a totally different way. We didn't look at the price or the nutritional value, we looked for things that were meltable in with little chewing. We also explored new options for the yogurt, we bought Trix yogurt in bright colors (changing the color helped avoid the food jags), we tried hummus, flavored cream cheese and eventually peanut butter. She didn't eat this on bagels and muffins, she ate them off a spoon like baby food. To this day Shana will still get the peanut butter and scoop a pile into a bowl and eat it with nothing else.
After 10 months of feeding and speech therapy, speech was necessary because feeding and speech are related, she was finally discharged from the feeding clinic. We were so thankful for their help. Shana continued speech and occupational therapy at home through Child Find.
I will end there for today. So the next time you sit down to eat, think about everything you are doing, which muscles are you using, move your tongue and swallow and think about how this action you do three to five times a day is so much more complicated than you ever realized.
Well, when Shana was 15 months old and still unable to eat anything thicker than yogurt without gagging and vomiting, it seemed that there was something wrong. Our pediatrician referred us to a feeding clinic (I never knew such a place existed). We made an appointment for the earliest date, 3 months later.
During this time Shana started refusing to eat baby food. Who could blame her, usually by the time you are 18 months you are eating many regular foods in cut up pieces. The food has salt and flavor, unlike the bland baby food. By the time we went to the feeding clinic Shana would only eat Safeway brand yogurt and milk. She was still gaining weight as she should but it took a lot of yogurt and milk to keep her going.
When we arrived at the feeding clinic with Shana we were taken to a room with a table facing a mirror, we knew the staff was watching us. They did this because having a herd of people come watch your child eat would be a little scary for the child. We fed her the foods she could eat and then some things she struggled with. At 18 months the foods she struggled with were pretty much everything.
After observing then the really interesting part started. The doctor came in and spent over an hour explaining to us exactly how we eat and how difficult it really is. She started with showing us how Shana had a hard time sitting up in the seat and leaned to one side on her arm to prop herself up. This made it difficult to eat because as the doctor so eloquently explained "how can you think about chewing when you feel like you may fall on your head". We got pillow to prop her up and this was the start.
We then learned that what we had called daintiness was actually a problem. Shana hated to touch anything messy, even her first birthday cake she poked at with one finger to get a tiny bit of frosting. This we found out was tactile defensiveness. She didn't like the feel of the food on her hand, so she would touch as little of it as possible.
Did you know that your tongue is controlled by both sides of your brain? I had not thought about it but it makes sense. It's similar to your arms. Now the tricky part is to eat you have to be able to move your tongue from side to side. When you do that your brain has to tell both parts of your tongue to do opposite things. This was Shana's other problem. She didn't move the food in her mouth to the side as she chewed and then swallowed. She swallowed off her tongue and would gag. Try chewing up a saltine cracker, then before you swallow move the pieces to the center of your tongue and try to swallow, it's difficult to do.
These are a few of the things that led us into feeding therapy and we were also referred to Child Find the program for children with disabilities. After many other tests we were told Shana had mild sensory issues, speech and motor delays.
Shana spent 10 months learning how to eat. Since she had already started refusing most foods, there was very little she could eat. We found out that when this happens she would eventually get tired of the yogurt she liked and stop eating it too. It's called a food jag, eventually without help she could have stopped eating entirely and would need to be fed though a belly-tube.
We had to get her trying new things and teach her how to chew and use her tongue. We started with pretzel rods to "explore" and we would always have to show her what to do and try to get her to mimic us. When we were in a restaurant, I'm pretty sure people thought we were crazy, going "chew, chew, chew" and playing with our food. We didn't care, it was working. Shana progressed from exploring to eating meltable foods. She would eat chickpea crackers called Papidi, puff Cheetos, Pirate Booty (puffed rice) and lots of other fun things. We shopped in a totally different way. We didn't look at the price or the nutritional value, we looked for things that were meltable in with little chewing. We also explored new options for the yogurt, we bought Trix yogurt in bright colors (changing the color helped avoid the food jags), we tried hummus, flavored cream cheese and eventually peanut butter. She didn't eat this on bagels and muffins, she ate them off a spoon like baby food. To this day Shana will still get the peanut butter and scoop a pile into a bowl and eat it with nothing else.
After 10 months of feeding and speech therapy, speech was necessary because feeding and speech are related, she was finally discharged from the feeding clinic. We were so thankful for their help. Shana continued speech and occupational therapy at home through Child Find.
I will end there for today. So the next time you sit down to eat, think about everything you are doing, which muscles are you using, move your tongue and swallow and think about how this action you do three to five times a day is so much more complicated than you ever realized.
Monday, May 10, 2010
Some Choices Are Made For Us
We started considering virtual or homeschooling a few weeks ago, although it's something we've always considered. We weren't sure we were going to do it yet, only look into it and see what we thought. Well, today I talked to Hunter's teacher and she let me know that there were some changes coming in the school and I have a feeling that she would no longer be his teacher.
This ways very heavy on our decision to pull him from the traditional school system. We have not been happy with the school district for several years and the kids have moved from school to school and teacher to teacher with some positives and some negatives each time we moved. Hunter has been shuffled from place to place and we have had many teachers who truly see his unique gifts and love him and work hard to help him. We have also had teachers who have only seen the negative in Hunter and have even allowed him to be bullied and picked on by other students during class, not doing anything to stop it and even at times making him feel like it was his fault.
This has caused a lot of trust issues with Hunter and it takes weeks or months for him to trust a teacher. This year with his new teacher he has built trust and now with another year coming and probably another change in teachers we really feel it is time for him to be schooled at home, where he will not need to have the constant changes of the school system.
Sunday, May 2, 2010
Little More Background
I thought I'd fill in a little more history of how we got to where we are today. The last time I posted any I left off at Shana's birth and admission to the hospital.
Shana spent 5 weeks in the NICU. She was on the ventilator for 5 weeks and we were not able to hold her during that time. We still came to the hospital at least 2-3 times a day. I had to work around my pumping schedule to provide milk for Shana. Once I was able to hold her I quickly took over as much of her cares as possible. I changed her, weighed her, fed her and rocked her for hours. We couldn't wait to take her home. One morning I walked into the NICU and the nurse said they were thinking of sending her home the next day and asked if I would like to stay in the family room to prepare for her coming home. I was thrilled. Then the doctor came up and checked Shana and asked if we would like to take her home that day! We had to arrange for an oxygen tank to be delivered to our house and at around 6pm on June 19th we brought her home.
The next several months were wonderful for our family. Shana got off the oxygen at about 2 1/2 months and then things seemed like they should be. Playing with and watching Shana grow was so amazing. She progressed right on track, only a couple of months behind. She rolled, and scooted and babbled and all the other typical baby things you watch for. Some things were a little slower, but not concerning. She showed little or now sign of wanting to try regular food, and did not start baby food till almost 8 months. She did fine with all the puree foods but could not seem to eat anything solid. She was also very dainty and didn't like to touch the food at all.
At 12 months we talked to the doctor and she said to wait and see if she starting eating more before 15 months. Which she did not. We went back to the doctor and she referred us to a feeding clinic. This began our journey of therapists, learning about disorders we'd never heard of and starting to find some answers to things we never expected.
Tuesday, April 27, 2010
Public, Private or Homeschool???
School options are difficult for any family. Where is the best school for my child? Should I send them to the public school? Will they be able to get a quality education there? Should we choose a private school? If so, do we choose a religious school or a highly rated prep school? Will we "fit in" at the prep school or will our children be teased throughout their education? Should we homeschool? Can I teach my children?
These are a few of the typical questions that run through many parents minds about their education choices. We have went through most of these as well. When our children began school we felt public school was the best choice because of their disabilities they would be able to receive the best services there. We had no idea how difficult finding the right school would be.
When Shana was in preschool she was very happy and she loved school. When she started Kindergarten her teacher did not really work well with her and she started showing signs of anxiety. We found a school that focused on arts and transferred her there. This was a great option for the first couple years. When the principal changed the school changed too. Shana was being bullied and the school seemed unwilling and unable and many times she was suspended for hitting a child after they were bullying her. She was angry and unhappy most of the time and we struggled with the decision of what to do.
Hunter was and still is another problem altogether when it comes to school. In the first year of preschool all his teachers thought he should attend the public gifted school in our district. We applied for his Kindergarten year and he was placed on the wait list. He ended up attending the same school as his sister. We applied at the gifted school again for 1st grade and he did not qualify because his test scores were too low. I asked them if they made any accommodations because of his Asperger's and they said no. He was tested in a room with 25 other kids and got bored with the test and instead added up the number of questions on all the sections and then subtracted the number of questions he answered on each section to find out how many he would miss. This number was his exact number he missed.
It became clear to us at this time that the gifted school, although it is suppose to be equal for all children and not pick just the best of the district that they do not want children like Hunter there. I have even talked to many parents of children at the school and they have said there is not much diversity and most the kids are not only smart but also highly motivated. Hunter is motivated to learn what he is interested in the subject but sees things differently and doesn't always follow the standard lesson plan.
After being suspended for 10 days in the beginning of first grade, Hunter had to change schools. The district strongly wanted him in a Behavior Development (BD) program, even though his behaviors stem from his disability. Thankfully we found a program with a teacher willing to work with him and understand our concerns and truly seemed to care. We also moved Shana at this time and coincidently the principal at the new school was her former principal at the arts school. This year has been very good for both children and they are both doing better. Hunter went downhill for a little while but seems to be picking back up and is getting into the main classroom frequently.
However, academically we are not sure if the traditional school can meet his needs. Hunter is very bright and learns quickly. He is currently in first grade yet is reading at the 3rd-4th grade or higher levels (testing is hard for him), he is doing 3rd-4th grade math and has created his own methods for doing math. The standard curriculum is not challenging or interesting. He has found mistakes in the tests and often creates his own answers or questions instead of completing the requested information.
We are considering homeschooling him next year, but are concerned about his social needs. Having Aspergers he needs to work on social skills. However, with the right support we should still be able to help him socially through groups and field trips. I think in many cases people that don't care for social situations find jobs and live their lives in a way that limits the amount of social contact they have with others.
So it adds more questions to the puzzle and all we can do is pray that we will make the right decisions. They are tough choices because we already feel like with Hunter we have lost almost 2 years because of all the changes and issues with his preschool (I will discuss that later) and we worry that if we make the wrong choice we will only set him back that much more. So we will continue praying and trust that God will lead us in the right direction.
Thursday, April 22, 2010
Back to School
Sending the kids back to school after a break is something most parents look forward too. They've spent their time with the kids and now are ready to get back in the routine. For us going back after a break often brings new questions and few answers.
During our recent break Hunter had a huge improvement in his behavior. We had one large meltdown but with firm consequences (he lost the majority of his toys by the end) he was able to pull it back together and then did so well he earned the toys back in one week.
He just went back to school yesterday from his break and already is hitting, kicking and biting. This evening he even refused to clean his room. That is until I said I'd be happy to clean it up with a trash bag. That got him moving.
We've been back and forth on the proper way to discipline a child with Aspergers. When he has meltdowns it is something like when you sneeze or cough, you can't control it. Your brain and body says you need to and you can't stop it. On the other hand, he has to learn to function in society in a proper manner.
At school they focus on how well he calms down. This is good, because he has improved well, but at home I am trying to prevent the meltdowns in the first place. I've found the things that he likes and I use them to stop the meltdowns. If he starts to get upset and looks like he's going to have a problem, I give one warning stating clearly what I'm taking if he continues to get upset. This works most of the time. But having Aspergers sometimes he can't stop and continues to meltdown.
The question is, if he is unable to control the meltdown do you still punish him? Would you punish someone if right as they were getting ready to sneeze you said "if you sneeze, I will take your toy", and then they sneeze anyway?
They couldn't stop the sneeze and often Hunter can't stop his meltdowns. His brain doesn't process the warning, or he truly is to disregulated to control his body.
Well, I still discipline and follow through with the consequence. It's hard because there are the times that I truly feel he was unable to regulate his emotions and reactions and it seems cruel to discipline him. But I have found that I cannot always know if he is in control or not and it is better to follow through either way and allow him to learn from the mistake. I do not want him to learn to use his disability as an excuse for bad behavior.
I want my children to grow to be responsible, caring, hard working adults. I hope that allowing him to work through and learn from his challenges is the best way to help him learn these things, no matter how hard they are now.
During our recent break Hunter had a huge improvement in his behavior. We had one large meltdown but with firm consequences (he lost the majority of his toys by the end) he was able to pull it back together and then did so well he earned the toys back in one week.
He just went back to school yesterday from his break and already is hitting, kicking and biting. This evening he even refused to clean his room. That is until I said I'd be happy to clean it up with a trash bag. That got him moving.
We've been back and forth on the proper way to discipline a child with Aspergers. When he has meltdowns it is something like when you sneeze or cough, you can't control it. Your brain and body says you need to and you can't stop it. On the other hand, he has to learn to function in society in a proper manner.
At school they focus on how well he calms down. This is good, because he has improved well, but at home I am trying to prevent the meltdowns in the first place. I've found the things that he likes and I use them to stop the meltdowns. If he starts to get upset and looks like he's going to have a problem, I give one warning stating clearly what I'm taking if he continues to get upset. This works most of the time. But having Aspergers sometimes he can't stop and continues to meltdown.
The question is, if he is unable to control the meltdown do you still punish him? Would you punish someone if right as they were getting ready to sneeze you said "if you sneeze, I will take your toy", and then they sneeze anyway?
They couldn't stop the sneeze and often Hunter can't stop his meltdowns. His brain doesn't process the warning, or he truly is to disregulated to control his body.
Well, I still discipline and follow through with the consequence. It's hard because there are the times that I truly feel he was unable to regulate his emotions and reactions and it seems cruel to discipline him. But I have found that I cannot always know if he is in control or not and it is better to follow through either way and allow him to learn from the mistake. I do not want him to learn to use his disability as an excuse for bad behavior.
I want my children to grow to be responsible, caring, hard working adults. I hope that allowing him to work through and learn from his challenges is the best way to help him learn these things, no matter how hard they are now.
Friday, April 16, 2010
Can We Find Normal?
There are days that we pray for a little bit of normal. For a day where the our family actually starts to feel just a little bit like the image we project to the public on a day to day basis. A day where we are all happy and content and things just feel right. These days are often few and far between and when they do occur we really don't want to comment that things are going well because that inevitably will cause the hammer to fall and then things go back to our "normal".
The last couple weeks have been like this. The kids have been off track from school and it has been very relaxed and the kids have been doing exceptionally well. Even with the death of their Grandfather they have held up well. Both the kids attended the funeral and we were so very proud of them. Both were sad but didn't get overly emotional, just sad. Hunter even saluted during taps (all on his own). This was so sweet to me and made me forget all the problems for that few minutes.
I will enjoy these days as long as they will last. The sad thing is with a child with Asperger's you can't just think to yourself that everything is going great and it will stay that way. It will end, it is only a matter of time. I'm not sure why he is doing well during this time, but I know that at any moment something could trigger a major meltdown. This makes it hard to enjoy the break, but I am still going to do my best.
Okay, I said I would try to go back through our history a little and now seems like a good time.
Let me start with Shana. We were very excited about becoming parents. We had dreams, but our dreams were not what we wanted for our child, but instead we wanted to allow our children to be what they want to be. My pregnancy with Shana was very uneventful up to the 32nd week. I had no morning sickness, no pain, no problems to speak of. I craved Mexican food and McDonald's french fries. Other then that there were no concerns.
When I was 32 weeks along we got a phone call late one night that my husbands cousin Eric had died in a horrible motorcycle accident. Eric was more like a brother to Pat than a cousin and we knew we had to attend the funeral. I immediately called my OBG and he said that there were no concerns with going. We would be driving about 6 hours to Albuquerque, NM. We were able to attend the funeral and had a few days to visit with family. On Saturday May 13, 2000 I was packing up my things so we could leave early the next morning. I had just finished and sat down at 10pm to watch a little tv before going to sleep. Then I felt like I had leaked (women you know what I mean). I went to the bathroom and it was clear to me that this was not right. My water had broke.
We rushed to the hospital, which coincendently was the same one my husband was born in. They stopped the labor and told us they were going to have to flight-for-life us to another hospital in the morning. The local hospitals with Level 4 NICU's were full. They said we would either be sent to Dallas, Lubbock, Phoenis or Denver. We asked if they could please get us to Denver as that was where we lived.
The next morning on Mother's Day, the crew from Denver arrived and we were loaded into an Ambulance and taken to the airport. There we were put on a lear jet and flown to Centennial Airport in Denver. I then got to ride in a helicopter from the airport to the hospital.
Once we got settled in they told me that since my water had ruptured and there was a high chance of infection they would not give me any more steroid shots (I had one in Albuquerque) until I was infection free for 48 hours. We were going to try to have me stay on bed rest in the hospital for 5 weeks if possible.
Shana couldn't wait though. On Tuesday May 16th, 2000 at 11am Shana was born. She weighed 4lbs 1oz and was 17 3/4 inches long. Very long and thin. I was able to hold her for only a few seconds before they took her to the NICU. We had decided Pat would stay with her and he left the room and went with Shana to the NICU. He came back a little later and told me they asked for him to step out because they needed to vetilate her.
I didn't see her again till a little later that day. She was hooked up to so many wires and the venilator to help her breath. She was so small but looked tough as nails. She was so pretty even with all the tubes and wires. She just melted my heart.
I will end for today. This is longer than I had expected to be. I will continue another day. I only pray the good days continue and allow me some time to go back through how we got to where we are today.
The last couple weeks have been like this. The kids have been off track from school and it has been very relaxed and the kids have been doing exceptionally well. Even with the death of their Grandfather they have held up well. Both the kids attended the funeral and we were so very proud of them. Both were sad but didn't get overly emotional, just sad. Hunter even saluted during taps (all on his own). This was so sweet to me and made me forget all the problems for that few minutes.
I will enjoy these days as long as they will last. The sad thing is with a child with Asperger's you can't just think to yourself that everything is going great and it will stay that way. It will end, it is only a matter of time. I'm not sure why he is doing well during this time, but I know that at any moment something could trigger a major meltdown. This makes it hard to enjoy the break, but I am still going to do my best.
Okay, I said I would try to go back through our history a little and now seems like a good time.
Let me start with Shana. We were very excited about becoming parents. We had dreams, but our dreams were not what we wanted for our child, but instead we wanted to allow our children to be what they want to be. My pregnancy with Shana was very uneventful up to the 32nd week. I had no morning sickness, no pain, no problems to speak of. I craved Mexican food and McDonald's french fries. Other then that there were no concerns.
When I was 32 weeks along we got a phone call late one night that my husbands cousin Eric had died in a horrible motorcycle accident. Eric was more like a brother to Pat than a cousin and we knew we had to attend the funeral. I immediately called my OBG and he said that there were no concerns with going. We would be driving about 6 hours to Albuquerque, NM. We were able to attend the funeral and had a few days to visit with family. On Saturday May 13, 2000 I was packing up my things so we could leave early the next morning. I had just finished and sat down at 10pm to watch a little tv before going to sleep. Then I felt like I had leaked (women you know what I mean). I went to the bathroom and it was clear to me that this was not right. My water had broke.
We rushed to the hospital, which coincendently was the same one my husband was born in. They stopped the labor and told us they were going to have to flight-for-life us to another hospital in the morning. The local hospitals with Level 4 NICU's were full. They said we would either be sent to Dallas, Lubbock, Phoenis or Denver. We asked if they could please get us to Denver as that was where we lived.
The next morning on Mother's Day, the crew from Denver arrived and we were loaded into an Ambulance and taken to the airport. There we were put on a lear jet and flown to Centennial Airport in Denver. I then got to ride in a helicopter from the airport to the hospital.
Once we got settled in they told me that since my water had ruptured and there was a high chance of infection they would not give me any more steroid shots (I had one in Albuquerque) until I was infection free for 48 hours. We were going to try to have me stay on bed rest in the hospital for 5 weeks if possible.
Shana couldn't wait though. On Tuesday May 16th, 2000 at 11am Shana was born. She weighed 4lbs 1oz and was 17 3/4 inches long. Very long and thin. I was able to hold her for only a few seconds before they took her to the NICU. We had decided Pat would stay with her and he left the room and went with Shana to the NICU. He came back a little later and told me they asked for him to step out because they needed to vetilate her.
I didn't see her again till a little later that day. She was hooked up to so many wires and the venilator to help her breath. She was so small but looked tough as nails. She was so pretty even with all the tubes and wires. She just melted my heart.
I will end for today. This is longer than I had expected to be. I will continue another day. I only pray the good days continue and allow me some time to go back through how we got to where we are today.
Wednesday, April 7, 2010
True Friends?
You always hear that you never really know who your true friends are until you experience a time of crisis. This is never more true than when you have a child with Aspergers. When my daughter was born 7 weeks premature everyone we knew was there to support us, to help babysit when we needed a break and even pitched in while my husband was deployed.
Over the years our support dwindled. I worked from home for awhile, making it easier as we needed less child care. But the stress from dealing with two children with disabilities has taken it's toll. We can't just call up the local teenage girl to watch our children as they would be unable to handle a meltdown if one were to happen. I would be afraid for the safety of my child as the meltdowns have the potential to push you near your breaking point if you are not trained to deal with it. I have to say it's funny as my husband and I have never been "trained" to deal with it, but I guess with all the on the job training we are doing okay.
We now have very few people to watch our children and even trying to find someone to watch my kids so my husband and I can go out for my birthday is hard. This can cause added stress by not getting a break from the daily struggles.
Over the years our support dwindled. I worked from home for awhile, making it easier as we needed less child care. But the stress from dealing with two children with disabilities has taken it's toll. We can't just call up the local teenage girl to watch our children as they would be unable to handle a meltdown if one were to happen. I would be afraid for the safety of my child as the meltdowns have the potential to push you near your breaking point if you are not trained to deal with it. I have to say it's funny as my husband and I have never been "trained" to deal with it, but I guess with all the on the job training we are doing okay.
We now have very few people to watch our children and even trying to find someone to watch my kids so my husband and I can go out for my birthday is hard. This can cause added stress by not getting a break from the daily struggles.
Monday, April 5, 2010
Death and Aspergers
Dealing with a death in the family can be hard for any family. It can be even more emotionally traumatic for a family with children like ours. Since both children have differing disabilities they respond to things in different ways then expected at times.
Yesterday, on Easter Sunday, my Father-In-Law passed away. My children had seen him the day before and we were surprised by his passing, even though we had a few signs that it would not be much longer, we were thinking a month or so longer. The chaos of dealing with the situation did not go well with our children and although we were able to have them picked up and taken to my grandparents it caused a lot of stress and disrupted their routines.
When I picked up the kids from my grandparents to take them home, the kids asked me what was going on. My husband wanted us to tell them together, so I told them when we got home we would talk to them. The kids heard me ask if we needed an ambulance earlier in the day and knew it had to do with Grandpa. In the car the kids said that they were worried because Grandpa was older and Hunter said that Grandpa would be a spirit sometime soon and Shana said he would go to heaven. It broke my heart and impressed me how well they understand life.
They both were very sad by the news and cried. Hunter cried in a way that surprised me. He sobbed and immediately said that he missed him.
We are concerned with how Hunter will handle the services, and if he will have more meltdowns from the stress of dealing with this extra loss. Today the kids are playing and seem unaware of the stress we are dealing with. They are fighting and Hunter had a meltdown over a toy not being the way he wanted it. We ended up throwing the toy away and this made him mad but it seemed like the best option. We will have to take it a day at a time and see what they need each day.
Wednesday, March 31, 2010
Deciding to Start
When you plan a family, you think of all the joys of parenthood and the dreams you have for your children. When my husband and I planned to have our first child, we only prayed for a healthy child that we could share our passions with and see what the child found to be of interest. On May 14th 2000 (Mother's Day) we found ourselves in the hospital 7 1/2 weeks before our due date of July 5th, worried for the health of our daughter. We never thought that premature birth would be one of the simpler challenges we would face in the coming years.
We love our children and like all parents had ideas of what being a parent would be like. We never expected it to be easy, but we also never expected to be blessed with two children with differing challenges and gifts that add to the chaos of parenthood. See, our darling daughter was born 7 weeks early and although she survived premature birth and appeared to be developing normally, we later found after many struggles and many tests that she had sensory integration dysfunction, AD/HD and PDD-NOS, she is also very talented in art, music and general education.
When our daughter was 2 we decided to have a second child. We knew she had sensory issues, but still did not know the full extent or this may have changed our decision. We were worried mostly about prematurity while pregnant with our son. Although we had many scares of premature delivery starting at 27 weeks we held on with him and he was only 4 weeks early. Although still technically a preemie, he was rugged and 22 pounds by 6 months old. Never in our wildest dreams would we have thought he would eventually be diagnosed with high-functioning autism or Aspergers syndrome and would be highly advanced, working much higher than his grade level. We never knew how this would affect our relationship not only with each other but also with our family, friends and at times perfect strangers.
I have held in many emotions and have found that this is causing pain and frustration, making it even more difficult to handle the day-to-day struggles we have with our children. I have decided to write about what we go through each day to inform others of the pain caused by these disorders and maybe to help someone else and maybe even to help myself find hope in the pain we feel at times.
I plan to go back through the history of our family throughout the days but also want to relay current struggles to help everyone see the daily challenges we face. This is hard as many of these emotions and feelings we have kept hidden from the world. We wear our social masks like everyone else and from the outside and on a good day, we are the typical couple with the perfect family of one boy and one girl. What is behind our doors is at times sad, depressing, hurtful, scary and painful, but we try to pick up the pieces everyday and start over, praying that God will give us the strength to handle one more day.
Before I close for today, I want to make one thing clear. I love both of my children with all of my heart and we are working hard every day to try to find answers, help and healing for our children. We will always do our best to help our children, but we are human and we fall sometimes. There are days I cry for hours from the struggles and others where I am able to just deal with the situation and move on like nothing ever happened. I just hope to share what we deal with everyday and see where we go from there.
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