In 5 days it will be 6 years since Andrew's accident. Around this time of year I always have waves of mixed emotions. Remembering bits and pieces if that time, when it happened and all the progress and rehabilitation. Thinking of how things are today and what things could have happened v.s. what has happened.
I had actually wanted to write this post in March but I was very busy. I wanted to write this in March because March was TBI Awareness Month.
Five days after Andrew had been hit head-on by a distracted driver he was still in a medically induced coma. Five days after the accident I was graduating from college. I only 'walked' because when I debated whether I was going to he told me I needed to, that I had worked hard to finish.
While listening to graduation speeches my phone rang. I knew it was the hospital so I answered. A nurse has noticed something funny with Andrew's eye so they took him for a CT scan. He had fluid on the brain and had many little mini strokes. They were asking my permission to place a monitor in his head to watch the fluid.
The CT showed mini strokes caused by fat embolisms and also some trauma from the accident. There was no way to know how this damage would affect him if and when he would wake up. He was very slow to wake from the coma. We were told his outcome didn't look good many times starting with he may never come to or he may need long term care. In fact the day he 'woke up' his parents and I had an appointment to look at a long-term care facility.
When he first woke his short term memory was horrible and long term memory was gapped and jumbled. He still was hospitalized could not get out of bed, feed himself, walk, and do self care. With therapies and medical intervention ( and tremendous will power) he has proven most predictions wrong.
Fast forward to today. This is why I even want to write. Andrew's recovery is remarkable beyond what we were told to expect. Many people meeting him the 1st 2nd or more might not even realize he has a brain injury. His brain did a great rewiring. He is very close to who is was before the accident..... but he is not.....
More and more lately the 'what he was and now is' has been getting to me. I see it a lot; with strangers and acquaintances. His brain takes longer to process. Longer to take in information and longer to get his thoughts out. People don't have the patience to wait for him, people are rude and only because is is a little slower. He is not slow enough for people to realize what is going on and just slow enough to annoy them in their fast paced world.
I have been thinking about this after several comments about how much patience I have with him. Most the time I am patience is something I am good at. But to be honest I am not always this way. I have to try really hard with him. Often times he still doesn't remember thing, things Ihave said, things he has already toltold me. Many times I get annoyed and even a little pissed that he forgot what I said. I have to remind myself that he was most likely listening but doesn't remember and sometimes it is the 3rd time I have told him.
His brain injury also has trained him to do things in specific ways, to find what works for him over and over. People that don't understand think what not does is ridiculous. They don't understand.
I guess there is good and bad things about how well he has recovered.
I leave this long post reminding you not to be on your phone while driving. It is not worth it.
Friday, May 6, 2016
Friday, April 29, 2016
Why I don't 'like' the video of the boy at the concert.
There is a video going around the internet of a little boy with autism crying at a Coldplay concert.
When I first saw the video I thought 'wow, how sweet' and I may have 'liked' the video on a page or two.
However like most feel good stories about people with autism multiple people started taging me or posting it to my page. It is not that I don't like feel good stories or stories about Autism..... but you see if you have seen it I have seen if on 4 different sites I follow and then some.
Ok back to the little boy seeing Coldplay live. After the video was posted to my wall 5 times.... yes 5.... I took the message as 'look, here is a child like your child. You have a child with autism like this boy.' So I watched it again looking at this boy as if he were mine and I didn't like it. Not because I am not really a Coldplay fan or anything. If I knew Miles loved Coldplay and wanted to see them I would take him.
When most people see the look on the boy's face they see his pure emotion. What I see is the start of sensory overload. I start to feel anxious looking at this boy. I am waiting for him to completely loose it, have a meltdown and try to run away. "But he loves Coldplay!" you tell me. Yes he does, I can see that too. I don't know this little boy. He may have more control than mine. Maybe his dad hugging him and singing to him helps him regulate.
I see a look I have seen on Miles before, but usually it doesn't go so well for Miles. One example is Miles' love for the movie Cars. One day he handed me the movie and I started it in the DVD player. The movie started and he got excited, beyond excited, like it was the best thing in the world. All of the sudden he pure joy turned into crying, but looked 'joyous'. Then he lost it! Started melting down, jumping screaming, hitting himself on the head. He could not regulate his emotions and looked scared. I turned it off and calmed him down.
When I first saw the video I thought 'wow, how sweet' and I may have 'liked' the video on a page or two.
However like most feel good stories about people with autism multiple people started taging me or posting it to my page. It is not that I don't like feel good stories or stories about Autism..... but you see if you have seen it I have seen if on 4 different sites I follow and then some.
Ok back to the little boy seeing Coldplay live. After the video was posted to my wall 5 times.... yes 5.... I took the message as 'look, here is a child like your child. You have a child with autism like this boy.' So I watched it again looking at this boy as if he were mine and I didn't like it. Not because I am not really a Coldplay fan or anything. If I knew Miles loved Coldplay and wanted to see them I would take him.
When most people see the look on the boy's face they see his pure emotion. What I see is the start of sensory overload. I start to feel anxious looking at this boy. I am waiting for him to completely loose it, have a meltdown and try to run away. "But he loves Coldplay!" you tell me. Yes he does, I can see that too. I don't know this little boy. He may have more control than mine. Maybe his dad hugging him and singing to him helps him regulate.
I see a look I have seen on Miles before, but usually it doesn't go so well for Miles. One example is Miles' love for the movie Cars. One day he handed me the movie and I started it in the DVD player. The movie started and he got excited, beyond excited, like it was the best thing in the world. All of the sudden he pure joy turned into crying, but looked 'joyous'. Then he lost it! Started melting down, jumping screaming, hitting himself on the head. He could not regulate his emotions and looked scared. I turned it off and calmed him down.
Tuesday, October 27, 2015
Welcome Nolan!
**** This story will talk about my going into labor and birth. If you don't want to know that, don't read this.
October 9, 2015 was the day my 3rd baby boy entered the world. Believe me when I say every pregnancy and every birth is a different experience. I was slightly nervous as the time was approaching for Nolan to be born. With Avery my water broke at 7:30 a.m. and he was born at 7:58 p.m.; 8 days before he was due. With Miles I was induced because of high blood pressure 4 or 5 days before his due date. I went in to the hospital and started induction at 8:00 p.m. and he arrived at 8:56 a.m. the next day.
My pregnancy with Nolan was my easiest. I was in the best shape and more active than in my other two pregnancies. My blood pressure was good, I didn't get super swollen (like I did with Avery) and I had only gained a total of 23lbs. I felt pretty good most the time until I got to my 39th week. To tell the rest of the story I have decided to make it more of a time line so that I can keep it straight.
Friday October 2, 2015: I was 39 weeks pregnant. I was for sure thinking I would not really make it this far. I was one day past the time Avery was born. I decided at my appointment that day to have the midwife check me to see how dilated my cervix was; if it was at all. She reported that I was already 4cm dilated and 75% effaced. She also mentioned that his head was also in the -1 position, meaning that his head was close to my cervix. That was further dilated than I was when I started inducing labor with Miles and almost as dilated when I got to the hospital after my water broke with Avery. The midwife guessed that I would probably give birth that weekend or early the next week.
Friday October 9, 2015: I had made it to 40 weeks and the actual due date. As I mentioned earlier I started feeling horrible. Everyday I kept thinking it had to be the day. I was having contractions, but nothing regular. If they started to seem regular for a certain amount of time then they would just stop and I would not have any more for hours or even until the next day. Every night I would go to bed thinking I would be woken up by labor... but nothing.
1:30 p.m. : I had my appointment. I asked the midwife to check and see how much I had progressed in dilatation. She reported that I was now at a 4 1/2 - 5 cm and 80% effaced. The baby's head was now at position 0, basically meaning in birthing position. I was a little disappointed. She offered to "strip my membranes" because sometimes that can help bring on labor. Basically it just thins the cervix more. She told me there could be some mild cramping for a few hours after she did this and maybe a little blood. We went home.
9:00 p.m. : We had continued our Friday night like any other night. We ordered dinner and did our thing and had our normal routines. Andrew was helping Avery brush his teeth and I grabbed my big maternity pillow to lay down with Miles in his bed. I placed the pillow on his bed and Miles decided it was the perfect place to lay in the groove of the pillow. He looked pretty sleepy, like he was just going to go to sleep. At that moment I felt a little cramping and decided I needed to go use the bathroom. I told Miles I would be right back and I started down the hall to the master bathroom. I started to feel very uncomfortable but made it to the bathroom. I continued to feel some cramping and saw blood. Even though it was hours after my appointment I kind of thought this was what Lindsey (my midwife) had been talking about.
9:30 p.m. : I still had not returned to the boys' bedroom. I didn't hear Miles so I figured he actually went to sleep (he did) and I could hear Andrew reading to Avery. I sent a text to him telling him I was having bad cramping and bleeding. There was no way I could walk back down the hall and I didn't want to scare Avery. The cramping had me crying at this point. Just like I had first thought, Andrew text me back saying 'Lindsey said this might happen'. I was a little annoyed but couldn't think straight enough to try to explain that I didn't think that was what was going on. I decided to get into the shower to try to help the pain. At first it made me feel better and relaxed. However after awhile the shower was not helping and I realized that I was in fact in very active labor. I stopped the shower and tried to lay down on my bed. At this point the contractions/ cramping would not stop. I was like one giant contraction with maybe a few tiny breaks. I started to panic and forgot how to do relaxing breathing and ended up vomiting dinner.
10:00 p.m. : Once I remembered how to do relaxing breathing I grab my phone I texted ' I need you to call the hospital right now!' Andrew comes in to ask me questions and is calling the hospital. Because it was after hours, an answering service answered the phone. The person on the phone asks Andrew how far apart my contractions are. He tells them he just walked into the room and does not know. I am screaming and crying and I hope the 'idiot' on the phone can hear me. He tells them that I just need to get to the hospital. There were a few things that needed to be repacked into hospital bags and Andrew went to get my mom from downstairs. She helped me get dressed since I could not do it myself and then helped me to the car.
10:30 p.m. : The contractions were pretty bad at this point and I don't really remember the drive to the hospital. I did of course notice the left hand turn at the red arrow Andrew made, but I don't care. After 9:00 pm you need to go to the ER to get into the hospital. Andrew pulled into the loading zone, turned on the flashers, and got me a wheelchair.
11:00 p.m.: It was around 11:00 when we arrived at the hospital. The security guards were trying to make jokes with us and the front desk was calling to have someone come wheel me to the 5th floor. At this point I was having a little bit of relief with contractions... or maybe I was just trying to ignore the guards. I seemed to take forever for someone to come get me. Andrew tells me it was at least 15 to 20 mins before we got upstairs.
(We will say it was) 11:20 p.m.: The put me into a triage room. The lady who wheels me in tells me to leave a urine sample and put on a gown. I think that is stupid but head to the bathroom as the lady leaves. No cup or gown in the bathroom... Lindsey (midwife) comes in to the room with a nurse and Andrew tells her about the cup and the gown; also he needs to move the van from the loading zone and leaves to do so. I go into the bathroom and a big contraction comes that makes me scream. I can't even sit down. The nurse comes running in followed by Lindsey and they help me undress from the waist down, throw a gown on me and as fast as they can get me on to a bed. Lindsey checks to see how much I am dilated. "Oh my gosh! You are 9 1/2 cm!" she exclaims. "We need to get her to a room." she tells the other people in the room "9 1/2 cm and bulging bag of water." she tells them. They wheel the bed out of the room, no time to try to get me up and move me. They swap out the triage bed I am on with the birthing bed. Lindsey tells me she hopes Andrew gets back upstairs in time. They barley have time to put an iv in me and ask some questions that are standard to be admitted.
11:40 p.m.: Andrew walks into the room around them time Lindsey tells me to push a little. With one push my water breaks. Then the news that there is meconium in the fluid meaning that Nolan had his first bowl movement in utero and that there would be protocol when he was born.
11:55 p.m.: Nolan makes his way into the world. The put him on top of me and then he started to cry. Since he started to cry they needed to suction his lungs right away so that the meconium would not be in his lungs. Lindsey cut the umbilical cord and they took him over to be suctioned. This was the hardest part. I didn't get to hold him at first. I could see him though. He had a very thick umbilical cord and a very large placenta. I got to hold him and then feed him. They took him back to weigh him. He was 10lbs 1.6oz and 22.5 inches long.
When I had Miles they told me my next one could be a 10lb baby, so I guess even though I thought he would not be that big I was not truly shocked. The 22.5 inches though... I don't think I will ever get over that!
October 9, 2015 was the day my 3rd baby boy entered the world. Believe me when I say every pregnancy and every birth is a different experience. I was slightly nervous as the time was approaching for Nolan to be born. With Avery my water broke at 7:30 a.m. and he was born at 7:58 p.m.; 8 days before he was due. With Miles I was induced because of high blood pressure 4 or 5 days before his due date. I went in to the hospital and started induction at 8:00 p.m. and he arrived at 8:56 a.m. the next day.
My pregnancy with Nolan was my easiest. I was in the best shape and more active than in my other two pregnancies. My blood pressure was good, I didn't get super swollen (like I did with Avery) and I had only gained a total of 23lbs. I felt pretty good most the time until I got to my 39th week. To tell the rest of the story I have decided to make it more of a time line so that I can keep it straight.
Friday October 2, 2015: I was 39 weeks pregnant. I was for sure thinking I would not really make it this far. I was one day past the time Avery was born. I decided at my appointment that day to have the midwife check me to see how dilated my cervix was; if it was at all. She reported that I was already 4cm dilated and 75% effaced. She also mentioned that his head was also in the -1 position, meaning that his head was close to my cervix. That was further dilated than I was when I started inducing labor with Miles and almost as dilated when I got to the hospital after my water broke with Avery. The midwife guessed that I would probably give birth that weekend or early the next week.
Friday October 9, 2015: I had made it to 40 weeks and the actual due date. As I mentioned earlier I started feeling horrible. Everyday I kept thinking it had to be the day. I was having contractions, but nothing regular. If they started to seem regular for a certain amount of time then they would just stop and I would not have any more for hours or even until the next day. Every night I would go to bed thinking I would be woken up by labor... but nothing.
1:30 p.m. : I had my appointment. I asked the midwife to check and see how much I had progressed in dilatation. She reported that I was now at a 4 1/2 - 5 cm and 80% effaced. The baby's head was now at position 0, basically meaning in birthing position. I was a little disappointed. She offered to "strip my membranes" because sometimes that can help bring on labor. Basically it just thins the cervix more. She told me there could be some mild cramping for a few hours after she did this and maybe a little blood. We went home.
9:00 p.m. : We had continued our Friday night like any other night. We ordered dinner and did our thing and had our normal routines. Andrew was helping Avery brush his teeth and I grabbed my big maternity pillow to lay down with Miles in his bed. I placed the pillow on his bed and Miles decided it was the perfect place to lay in the groove of the pillow. He looked pretty sleepy, like he was just going to go to sleep. At that moment I felt a little cramping and decided I needed to go use the bathroom. I told Miles I would be right back and I started down the hall to the master bathroom. I started to feel very uncomfortable but made it to the bathroom. I continued to feel some cramping and saw blood. Even though it was hours after my appointment I kind of thought this was what Lindsey (my midwife) had been talking about.
9:30 p.m. : I still had not returned to the boys' bedroom. I didn't hear Miles so I figured he actually went to sleep (he did) and I could hear Andrew reading to Avery. I sent a text to him telling him I was having bad cramping and bleeding. There was no way I could walk back down the hall and I didn't want to scare Avery. The cramping had me crying at this point. Just like I had first thought, Andrew text me back saying 'Lindsey said this might happen'. I was a little annoyed but couldn't think straight enough to try to explain that I didn't think that was what was going on. I decided to get into the shower to try to help the pain. At first it made me feel better and relaxed. However after awhile the shower was not helping and I realized that I was in fact in very active labor. I stopped the shower and tried to lay down on my bed. At this point the contractions/ cramping would not stop. I was like one giant contraction with maybe a few tiny breaks. I started to panic and forgot how to do relaxing breathing and ended up vomiting dinner.
10:00 p.m. : Once I remembered how to do relaxing breathing I grab my phone I texted ' I need you to call the hospital right now!' Andrew comes in to ask me questions and is calling the hospital. Because it was after hours, an answering service answered the phone. The person on the phone asks Andrew how far apart my contractions are. He tells them he just walked into the room and does not know. I am screaming and crying and I hope the 'idiot' on the phone can hear me. He tells them that I just need to get to the hospital. There were a few things that needed to be repacked into hospital bags and Andrew went to get my mom from downstairs. She helped me get dressed since I could not do it myself and then helped me to the car.
10:30 p.m. : The contractions were pretty bad at this point and I don't really remember the drive to the hospital. I did of course notice the left hand turn at the red arrow Andrew made, but I don't care. After 9:00 pm you need to go to the ER to get into the hospital. Andrew pulled into the loading zone, turned on the flashers, and got me a wheelchair.
11:00 p.m.: It was around 11:00 when we arrived at the hospital. The security guards were trying to make jokes with us and the front desk was calling to have someone come wheel me to the 5th floor. At this point I was having a little bit of relief with contractions... or maybe I was just trying to ignore the guards. I seemed to take forever for someone to come get me. Andrew tells me it was at least 15 to 20 mins before we got upstairs.
(We will say it was) 11:20 p.m.: The put me into a triage room. The lady who wheels me in tells me to leave a urine sample and put on a gown. I think that is stupid but head to the bathroom as the lady leaves. No cup or gown in the bathroom... Lindsey (midwife) comes in to the room with a nurse and Andrew tells her about the cup and the gown; also he needs to move the van from the loading zone and leaves to do so. I go into the bathroom and a big contraction comes that makes me scream. I can't even sit down. The nurse comes running in followed by Lindsey and they help me undress from the waist down, throw a gown on me and as fast as they can get me on to a bed. Lindsey checks to see how much I am dilated. "Oh my gosh! You are 9 1/2 cm!" she exclaims. "We need to get her to a room." she tells the other people in the room "9 1/2 cm and bulging bag of water." she tells them. They wheel the bed out of the room, no time to try to get me up and move me. They swap out the triage bed I am on with the birthing bed. Lindsey tells me she hopes Andrew gets back upstairs in time. They barley have time to put an iv in me and ask some questions that are standard to be admitted.
11:40 p.m.: Andrew walks into the room around them time Lindsey tells me to push a little. With one push my water breaks. Then the news that there is meconium in the fluid meaning that Nolan had his first bowl movement in utero and that there would be protocol when he was born.
11:55 p.m.: Nolan makes his way into the world. The put him on top of me and then he started to cry. Since he started to cry they needed to suction his lungs right away so that the meconium would not be in his lungs. Lindsey cut the umbilical cord and they took him over to be suctioned. This was the hardest part. I didn't get to hold him at first. I could see him though. He had a very thick umbilical cord and a very large placenta. I got to hold him and then feed him. They took him back to weigh him. He was 10lbs 1.6oz and 22.5 inches long.
When I had Miles they told me my next one could be a 10lb baby, so I guess even though I thought he would not be that big I was not truly shocked. The 22.5 inches though... I don't think I will ever get over that!
Sunday, July 5, 2015
Ups and Downs of Autism
Having a child with autism is not easy, however I would not change Miles. Sure there are some things I wish he would do and other things I wish he would not do, but that does not mean I would change his having autism.
In the last couple of weeks I have seen so much growth, and not just the fact he has lost his 'baby look'. He has been listening more and following instructions. He even cleaned up a game when I told Avery it was time to clean up. He has shown he can be more independent in some situation in public. He has been attempting to dress himself, eat more with a fork and he starts getting a little mad when he can't do it right. He has been playing with peers during therapy and attempting to play with Avery more, including initiating play.
However then there is today, where I get reminded that even through the triumphs there is still so far to go. I could tell today that he needed to climb; that was his sensory need today. So we went to a playground were he could climb. He was doing great on his own going between the rock climbing wall and the play set. I could see him and was comfortable sitting in the shade and keeping my eye on him. I used to look like one of those crazy parents following him around so that he was in arms reach..... but he used to run.
At one point I saw him start to walk past the play set. I got up to start following him. I don't walk very fast right now and my pregnant self has begun to waddle. I started to see him walk towards people at some tables and noticed they probably have food. One thing we still are learning.... we can't just have anyone's food. I start to call to him to stop since that has been working, but this time no luck. I see they have bags of chips, but they all look closed so I did not feel I needed to be in a hurry. I get to the shelter where the tables are and I then see a woman get up and tell Miles to stop. Nice try lady... but then I see her grab him and manhandle him away from the table (probably because here is this 6-year-old acting like a toddler and not listening) and she is yelling at him. I see he got his had into what was maybe frosting on a giant cookie.
If she was not manhandling him like she was I probably would have gotten upset with Miles and apologized. Instead I found myself yelling 'get your hands off him! He has autism, he doesn't know!' Now I hate using autism as an excuse, but that is what it was. The woman looks shocked, lets his go and says "Sorry" I take Miles by the hand; at this point I am still not sorry that he touched her food. You don't touch my child like that. (She is lucky he is not a biter). As I walk away this guy that was at the table with her says "You should be watching him then!." I turn and say 'Thank you but I was, didn't you see me walking over here to get him? I didn't know you had something he really wanted over here.' To that he says "Yeah right, little brat!" And then I even surprised myself and turned back around and yelled at him 'shut the f*** up'. Now if you know me I don't drop 'F bombs' and especially not at a playground.
I return to where Andrew was and I start hyperventilating and crying uncontrollably. We stay at the playground, I am now being stared at.... until Miles is now having a meltdown and we go home.
To end on a good note: At home Avery is watching Star Wars Episode 6. Miles is next to me on the couch and I say out loud, " I bet Yoda is not happy with Luke's choice in clothes. Yoda is like ' You should not wear black like your father!' " and Miles starts cracking up. He has a good sense of humor.
In the last couple of weeks I have seen so much growth, and not just the fact he has lost his 'baby look'. He has been listening more and following instructions. He even cleaned up a game when I told Avery it was time to clean up. He has shown he can be more independent in some situation in public. He has been attempting to dress himself, eat more with a fork and he starts getting a little mad when he can't do it right. He has been playing with peers during therapy and attempting to play with Avery more, including initiating play.
However then there is today, where I get reminded that even through the triumphs there is still so far to go. I could tell today that he needed to climb; that was his sensory need today. So we went to a playground were he could climb. He was doing great on his own going between the rock climbing wall and the play set. I could see him and was comfortable sitting in the shade and keeping my eye on him. I used to look like one of those crazy parents following him around so that he was in arms reach..... but he used to run.
At one point I saw him start to walk past the play set. I got up to start following him. I don't walk very fast right now and my pregnant self has begun to waddle. I started to see him walk towards people at some tables and noticed they probably have food. One thing we still are learning.... we can't just have anyone's food. I start to call to him to stop since that has been working, but this time no luck. I see they have bags of chips, but they all look closed so I did not feel I needed to be in a hurry. I get to the shelter where the tables are and I then see a woman get up and tell Miles to stop. Nice try lady... but then I see her grab him and manhandle him away from the table (probably because here is this 6-year-old acting like a toddler and not listening) and she is yelling at him. I see he got his had into what was maybe frosting on a giant cookie.
If she was not manhandling him like she was I probably would have gotten upset with Miles and apologized. Instead I found myself yelling 'get your hands off him! He has autism, he doesn't know!' Now I hate using autism as an excuse, but that is what it was. The woman looks shocked, lets his go and says "Sorry" I take Miles by the hand; at this point I am still not sorry that he touched her food. You don't touch my child like that. (She is lucky he is not a biter). As I walk away this guy that was at the table with her says "You should be watching him then!." I turn and say 'Thank you but I was, didn't you see me walking over here to get him? I didn't know you had something he really wanted over here.' To that he says "Yeah right, little brat!" And then I even surprised myself and turned back around and yelled at him 'shut the f*** up'. Now if you know me I don't drop 'F bombs' and especially not at a playground.
I return to where Andrew was and I start hyperventilating and crying uncontrollably. We stay at the playground, I am now being stared at.... until Miles is now having a meltdown and we go home.
To end on a good note: At home Avery is watching Star Wars Episode 6. Miles is next to me on the couch and I say out loud, " I bet Yoda is not happy with Luke's choice in clothes. Yoda is like ' You should not wear black like your father!' " and Miles starts cracking up. He has a good sense of humor.
Saturday, January 24, 2015
A 6-year-old's party
Planning a party for someone turning 6 should not be too hard. I know I am probably thinking too hard about this.
With Miles' autism he probably would not care if he had a party at all. However it is fair to him to have one. We have gone all out for Avery when it is his birthday and he wants us to do the same for his brother.
I thought about having something small. I mean really small. I also thought about inviting his whole class. I know there are some kiddos that just adore Miles and would love to be invited. I am also worried that people will feel like they have to come. Or even that no one will come.
Also I wonder if it would be strange if I request no gifts or only books, or balls you can put in a ball pit!
With Miles' autism he probably would not care if he had a party at all. However it is fair to him to have one. We have gone all out for Avery when it is his birthday and he wants us to do the same for his brother.
I thought about having something small. I mean really small. I also thought about inviting his whole class. I know there are some kiddos that just adore Miles and would love to be invited. I am also worried that people will feel like they have to come. Or even that no one will come.
Also I wonder if it would be strange if I request no gifts or only books, or balls you can put in a ball pit!
Tuesday, January 13, 2015
Feelings are like children.....
"Feelings are like children. You can't let them drive, but you can't stuff them in the trunk either." - status borrowed from Chris Bischof
I don't know if it is the new year, the weather, hormones, January blues and I need more vitamin D, but I have been an emotional weirdo. Maybe I am starting to learn how to display human emotion ;)
Thank you for.... well thank you.
I shared a blog post that was not my own via Facebook the other day. The blog was about being "the invisible family". The writer did not go into deal about her child, but let out some feelings she had about feeling left out. All my emotions (like children you are not supposed to stuff in the trunk) escaped. Based on a few select events that happened months and months ago and a few little select times I have felt left out piled on top jumped out like a cat you are trying to put in a bath tub full of water.
After comments to my share of the blog I for sure realize that I am not alone. I knew that but when you are being emotional you loose sight and forget. I also want to thank my neighbor for her kind private message; also reminding me that all people feel left out from time to time. That conversation also started to get me to remember some of the positive invites we received lately. That we are not always forgotten, that people are trying and will be understanding if the event ended up not in our favor.
In December the boys were invited to two birthday parties. One of those I was a little worried about. We attempted the party because it was just down the street. If Miles and I needed to leave I could come back and get Avery later. Miles did GREAT! He didn't really play with the kids, but we didn't have to leave and he was happy. The second one was Avery's friend Colin's party and Miles is familiar with his house and there is definitely mutual understanding between our families. But again Miles did GREAT! Followed by what I will call THE BEST CHRISTMAS MILES HAS EVER HAD!
We were also invited to a wonderful New Year's Eve party at our neighbors house down the street. Andrew and I made a "Miles Plan" in case things went South. The party started at 8:00 and we were not sure how Miles, who gets cranky if not sleeping by 9:00pm, would be in a house that is partying. Miles was happy and on the move until he fell asleep on the couch at 11:00! He mostly stayed around the kitchen and ate food. There was a party of the kids downstairs and a party for the adults upstairs. Miles would float freely between the two. Andrew and I would take turns peeking checking on him since he has a thing about getting into soap and candles. Miles even took time to stop and laugh at his parents trying to put hit an orange into a circle with only a banana that was hanging from a rope worn around our necks. It was a fun night and we did not have too much worry.
Also in October I was invited to so many product parties I thought I might have to go to jail for murdering someone. I did go to two of them though. One I hosted and one that my main gal had. If I would have gone to all of them I would have had two a week, plus Avery's b-day party and I would be a poor! Not to mention my family would have thought I left them to make a career out of product parties (but spending not making money).
Going back to the quote at the top of this page: I think I stuff too many children in the trunk. Then I feel bad and to make it up I tell them "I'm sorry to make it up to you I'll let you drive." I'm sure I'm not the only one.
Original blog post that I shared on FB about feeling left out: http://blogs.babycenter.com/mom_stories/01062015-this-is-how-it-feels-to-be-the-left-out-family/?utm_source=popsugar.com&utm_medium=referral&utm_campaign=pubexchange_facebook
I don't know if it is the new year, the weather, hormones, January blues and I need more vitamin D, but I have been an emotional weirdo. Maybe I am starting to learn how to display human emotion ;)
Thank you for.... well thank you.
I shared a blog post that was not my own via Facebook the other day. The blog was about being "the invisible family". The writer did not go into deal about her child, but let out some feelings she had about feeling left out. All my emotions (like children you are not supposed to stuff in the trunk) escaped. Based on a few select events that happened months and months ago and a few little select times I have felt left out piled on top jumped out like a cat you are trying to put in a bath tub full of water.
After comments to my share of the blog I for sure realize that I am not alone. I knew that but when you are being emotional you loose sight and forget. I also want to thank my neighbor for her kind private message; also reminding me that all people feel left out from time to time. That conversation also started to get me to remember some of the positive invites we received lately. That we are not always forgotten, that people are trying and will be understanding if the event ended up not in our favor.
In December the boys were invited to two birthday parties. One of those I was a little worried about. We attempted the party because it was just down the street. If Miles and I needed to leave I could come back and get Avery later. Miles did GREAT! He didn't really play with the kids, but we didn't have to leave and he was happy. The second one was Avery's friend Colin's party and Miles is familiar with his house and there is definitely mutual understanding between our families. But again Miles did GREAT! Followed by what I will call THE BEST CHRISTMAS MILES HAS EVER HAD!
We were also invited to a wonderful New Year's Eve party at our neighbors house down the street. Andrew and I made a "Miles Plan" in case things went South. The party started at 8:00 and we were not sure how Miles, who gets cranky if not sleeping by 9:00pm, would be in a house that is partying. Miles was happy and on the move until he fell asleep on the couch at 11:00! He mostly stayed around the kitchen and ate food. There was a party of the kids downstairs and a party for the adults upstairs. Miles would float freely between the two. Andrew and I would take turns peeking checking on him since he has a thing about getting into soap and candles. Miles even took time to stop and laugh at his parents trying to put hit an orange into a circle with only a banana that was hanging from a rope worn around our necks. It was a fun night and we did not have too much worry.
Also in October I was invited to so many product parties I thought I might have to go to jail for murdering someone. I did go to two of them though. One I hosted and one that my main gal had. If I would have gone to all of them I would have had two a week, plus Avery's b-day party and I would be a poor! Not to mention my family would have thought I left them to make a career out of product parties (but spending not making money).
Going back to the quote at the top of this page: I think I stuff too many children in the trunk. Then I feel bad and to make it up I tell them "I'm sorry to make it up to you I'll let you drive." I'm sure I'm not the only one.
Original blog post that I shared on FB about feeling left out: http://blogs.babycenter.com/mom_stories/01062015-this-is-how-it-feels-to-be-the-left-out-family/?utm_source=popsugar.com&utm_medium=referral&utm_campaign=pubexchange_facebook
Saturday, January 10, 2015
Dear Avery
Dear Avery,
I promise 2015 will be a better year. My number one goal is you.
I realized from our conversation the other night that I am right on target, I understand now. You didn't say much but you didn't have to, as your momma I get plenty of practice being a mind reader.
I have not been happy with your behavior lately, but do you know what I realized? It's not you that needs to change your behavior, it's me. I had to take a step back and look at the whole picture.
Avery, you are one of the smartest people I know. You are wise beyond your 7 years. Everyday you surprise me, however since you are a child of a scientist and a teacher, I should not be surprised at how much you love to learn. Please keep that up, make school easy for yourself.
I needed to look at all that is going on in your life, you have a lot going on.
You have always been a great big brother. You were thrown into that role when you were only 17 months old. I have been so proud of what a great and helpful big brother you are. Miles looks up to you and probably loves you more than anyone. I imagine that it is not easy all the time growing up with a brother who is not only different that you, but different from your friends, and different from your friends' siblings. I'm sure it gives you a lot to think about. I think you often wonder where you fit in, who you relate to. I'm sure this difference in you life has helped make you kind and understanding.
Mrs. Carmen said to me the other day that siblings of children with special needs have to think about a lot. They have to think about how their sibling behaves and how their peers behave and how they need to behave. I have noticed this when I see you take on some of the less desired behavors of your peers. I have come to understand that right now it is ok and what you need to do.
Since you were only 2 1/2 when your dad was in his accident you may not remember what he was like before. You may not remember him without his disabilities. But knowing you, you probably think about that too.
I realized you think we are always mad at you. So I am going to work on that. Like I told you, we are not mad. Maybe upset from time to time. That perhaps we expect to much from you. I told you that can happen to the child that is 1st born, and since you are the first born of two first born... well I realize the odds might not be in your favor. I reminded you that even when we are upset, we get over it and aren't upset anymore and we need to tell you that. We give you high expectations, because you are smart enough, we want you to make wise decisions in life, you are a role-model. We want you to help others, like Miles, make them too.
My goals: make sure to tell you I love you everyday. Let you be a kid. Let you cool down before I tell you why I was upset and tell you I'm not upset anymore. Not pester you when you need your time to think and decompress. Have more Avery + Momma time.
I love you Avery James.
Now I think I need to go listen to the song "Dear Avery" by The Decemberists
I promise 2015 will be a better year. My number one goal is you.
I realized from our conversation the other night that I am right on target, I understand now. You didn't say much but you didn't have to, as your momma I get plenty of practice being a mind reader.
I have not been happy with your behavior lately, but do you know what I realized? It's not you that needs to change your behavior, it's me. I had to take a step back and look at the whole picture.
Avery, you are one of the smartest people I know. You are wise beyond your 7 years. Everyday you surprise me, however since you are a child of a scientist and a teacher, I should not be surprised at how much you love to learn. Please keep that up, make school easy for yourself.
I needed to look at all that is going on in your life, you have a lot going on.
You have always been a great big brother. You were thrown into that role when you were only 17 months old. I have been so proud of what a great and helpful big brother you are. Miles looks up to you and probably loves you more than anyone. I imagine that it is not easy all the time growing up with a brother who is not only different that you, but different from your friends, and different from your friends' siblings. I'm sure it gives you a lot to think about. I think you often wonder where you fit in, who you relate to. I'm sure this difference in you life has helped make you kind and understanding.
Mrs. Carmen said to me the other day that siblings of children with special needs have to think about a lot. They have to think about how their sibling behaves and how their peers behave and how they need to behave. I have noticed this when I see you take on some of the less desired behavors of your peers. I have come to understand that right now it is ok and what you need to do.
Since you were only 2 1/2 when your dad was in his accident you may not remember what he was like before. You may not remember him without his disabilities. But knowing you, you probably think about that too.
I realized you think we are always mad at you. So I am going to work on that. Like I told you, we are not mad. Maybe upset from time to time. That perhaps we expect to much from you. I told you that can happen to the child that is 1st born, and since you are the first born of two first born... well I realize the odds might not be in your favor. I reminded you that even when we are upset, we get over it and aren't upset anymore and we need to tell you that. We give you high expectations, because you are smart enough, we want you to make wise decisions in life, you are a role-model. We want you to help others, like Miles, make them too.
My goals: make sure to tell you I love you everyday. Let you be a kid. Let you cool down before I tell you why I was upset and tell you I'm not upset anymore. Not pester you when you need your time to think and decompress. Have more Avery + Momma time.
I love you Avery James.
Now I think I need to go listen to the song "Dear Avery" by The Decemberists
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