Four years ago in October was when Miles was diagnosed with Autism Spectrum Disorder. He was 4 and a half at the time and with that diagnosis it helped open up some possibilities for therapy. One of those therapies being ABA or Applied Behavioral Analysis. ABA is designed to reward desired behaviors and change unwanted behaviors by rewarding wanted behaviors. We were able to get Miles is right away and he started right after Thanksgiving. I remember because I did all my Christmas shopping that year while he was at therapy and Avery was a school.
When he started therapy was 2 hours a day for 5 days a week. He also had pre-school 4 days a week for 3 hours and speech therapy on Fridays for 30 mins. It was a lot but it was going well. The next year he went to full day Kindergarten so I changed the schedule for after school and wanted to have him go three days a week because the family went to the recreation center Tuesday and Thursday nights and I didn't want to change that. So then he was doing 2 hours for 3 days a week, full day Kindergarten and 45min speech therapy Wednesday mornings. Yes, a very busy kiddo, but he was handling it great.
Next move was the therapy place changing the Friday session to only an hour. This was because they didn't want the employees there of Friday later than 5:30p.m. Sure. Then later the sessions were switched to 1 and a half hours with no explanation and them asking ME why I couldn't make the Friday session until 6:00PM. Monday, Wednesday and Friday from 4:30 - 6, has been the schedule for over a year now. This includes the summer, even though I expressed the want to increase hours.
SO this brings me to present day. We have only 3 more sessions and then there will be no more ABA therapy. 4 years after he started. Why? Because I refused to be bullied into a "mandatory 10 hours per week" schedule. A schedule that would require me to pick up my child every day from school 30mins early, or bring him an hour late, or have him miss 3 hours of school.... EVERY DAY! I said no. Miles is doing great in school. They work on the same things ABA was working on. And I couldn't do. Why would I take my child out of school so they could work on him dressing himself and washing hands for 2 hours every day? That is what he was working on. He head clinician even told me they had no behavior goals to work on and that they would just work on functional things.... um no. Not to mention how much I pay out of pocket for ABA. I can make my child wash his hands for two hours for free... thank you very much.
It was really hard for me to decide. Here was my internal struggle:
I really don't want to drive there every f* day. 30mins there and 30 mins home. I don't get home until 6:30 every day three days out of the week already and I hate it. But people commute farther to work every day. But I'm not going to work... I don't get paid... actually I pay them... what was it when I figured it out with the case worker? Oh, yeah more than $900.00 a month... sh*t.
Wait though, this isn't about me. This is about my child. Does he need this therapy? Is it worth it to him? She said they don't have any ideas and we don't have any ideas about behaviors to work on. And if I do find a behavior and ask them they just say "That's odd, ok we will watch it" and then they just track how many times he does it with no real solution... or "how do we stop him from doing this?" .... I don't f* know, how bout you pay me behaviorist!
Also how can they tell me mandatory hours and tell my friends family "we have no hours"? I call BS.
See it was making me crazy.
Monday, November 20, 2017
Wednesday, September 20, 2017
Being a mom is tough
It has been awhile since I have written. I have a lot to say so I decided to do it this way.
Being a mom is tough. It helps when you have a village to help you. You know, friends neighbors, teachers ect. When you have a child with special needs your village grows. It can be a great and wonderful thing. More people to support you, more people to help your child grow, more people who help you be excited about the small things. However, the more people involved, the more it can seem overwhelming, the phrase "too many cooks in the kitchen" comes to mind.
Even with this expanded village the child's parents have the first and final say on all regards to the child. This is where my rant begins.
Miles has been using a tablet with a communication program for about 1½ years now (I think my math is correct). He is still learning how to uses it because sometimes skills can take him awhile to learn (plus he is stubborn). It was decided to get it so he could be on the same communication page with school, home and all this therapy. For most things we are on the same page and it great.
The problem is ABA therapy (Applied Behavioral Analysis). The person who is in charge of his programs has be butting heads with me and the speech therapist for months now. She thinks the talker should be set up a certain way, different than how it is set up EVERYWHERE else. She thinks she is making it easier for him.... She agrees everything should be the same and uniform but HER way.
THIS IS MY CHILD'S VOICE!!!!!!!
Her actions, her insisting, and now and email she sent to speech therapy really has me sitting on the line to take me child out. She told the therapist she wanted the talker a certain way, that she wanted speech to do it the same way and for them to tell me to do it that way too. HELL NO! That is not how this works. (P.S. I just had to stop typing to answer a call from ABA, he session is cancelled tonight, oh well)
The best attitude to have for a special needs child, or really any child, is knowing what challenges they have, but focussing on the stuff they are capable of. Most of Miles' village believe he is capable of so much, more than he shows us. I love them for that. This is why I am frustrated with ABA. The way she wants the talker is like her telling me that she doesn't believe in his ability to communicate. That she is focused on what parts he doesn't use instead of what he does use.
Being a mom is tough. It helps when you have a village to help you. You know, friends neighbors, teachers ect. When you have a child with special needs your village grows. It can be a great and wonderful thing. More people to support you, more people to help your child grow, more people who help you be excited about the small things. However, the more people involved, the more it can seem overwhelming, the phrase "too many cooks in the kitchen" comes to mind.
Even with this expanded village the child's parents have the first and final say on all regards to the child. This is where my rant begins.
Miles has been using a tablet with a communication program for about 1½ years now (I think my math is correct). He is still learning how to uses it because sometimes skills can take him awhile to learn (plus he is stubborn). It was decided to get it so he could be on the same communication page with school, home and all this therapy. For most things we are on the same page and it great.
The problem is ABA therapy (Applied Behavioral Analysis). The person who is in charge of his programs has be butting heads with me and the speech therapist for months now. She thinks the talker should be set up a certain way, different than how it is set up EVERYWHERE else. She thinks she is making it easier for him.... She agrees everything should be the same and uniform but HER way.
THIS IS MY CHILD'S VOICE!!!!!!!
Her actions, her insisting, and now and email she sent to speech therapy really has me sitting on the line to take me child out. She told the therapist she wanted the talker a certain way, that she wanted speech to do it the same way and for them to tell me to do it that way too. HELL NO! That is not how this works. (P.S. I just had to stop typing to answer a call from ABA, he session is cancelled tonight, oh well)
The best attitude to have for a special needs child, or really any child, is knowing what challenges they have, but focussing on the stuff they are capable of. Most of Miles' village believe he is capable of so much, more than he shows us. I love them for that. This is why I am frustrated with ABA. The way she wants the talker is like her telling me that she doesn't believe in his ability to communicate. That she is focused on what parts he doesn't use instead of what he does use.
Tuesday, November 15, 2016
Not again, and I hope it never happens to you.
Seriously! I don't understand people.
I have written about this before and I will probably have to write about it again.
My husband Andrew is a brain injury survivor. He had a stroke and other brain injury complications from a car accident. He has recovered way past what we have been told what to expect. He tries hard not to let it keep him back and not to use it for any excuse.
But it is there.... and people are jerks. It doesn't matter if you forgot or don't know people are still jerks.
He is a little bit slow, and he hates that. He hates when people make him feel stupid.... because he is not.
He sometimes needs more explanation or for you to repeat it, but not because of what you said, but just for him so he can understand it. And sometimes he forgot what you said or if you answered his question. That is brain injury. You can never be 100% better.
If he asks you a question to clarify, he is not being rude; even if it comes across that way
His brain thinks either on multiple broken tracks or on one straight track that is ridged and makes since and never changes. If he asks he is not questioning you or how you do it in hopes that you change it, or do it his way: you just set up a road block in his brain and he is only trying to make it make sense. Be kind, have patience, explain it and know it still might not make sense..... he may ask again until it makes does. You should not be that way only to him, but to everyone. You would want them to be that way with you, your spouse, your children, your parents....
If you think I am talking about you, you are right. I am talking to EVERYONE. Every person that reads this, every person who wants to talk about this. I hope you or your loves ones never have a severe brain injury, and if they do I hope they can have a phenomenal recovery.... and I hope everyone including you treats them with the respect they deserve.
I have written about this before and I will probably have to write about it again.
My husband Andrew is a brain injury survivor. He had a stroke and other brain injury complications from a car accident. He has recovered way past what we have been told what to expect. He tries hard not to let it keep him back and not to use it for any excuse.
But it is there.... and people are jerks. It doesn't matter if you forgot or don't know people are still jerks.
He is a little bit slow, and he hates that. He hates when people make him feel stupid.... because he is not.
He sometimes needs more explanation or for you to repeat it, but not because of what you said, but just for him so he can understand it. And sometimes he forgot what you said or if you answered his question. That is brain injury. You can never be 100% better.
If he asks you a question to clarify, he is not being rude; even if it comes across that way
His brain thinks either on multiple broken tracks or on one straight track that is ridged and makes since and never changes. If he asks he is not questioning you or how you do it in hopes that you change it, or do it his way: you just set up a road block in his brain and he is only trying to make it make sense. Be kind, have patience, explain it and know it still might not make sense..... he may ask again until it makes does. You should not be that way only to him, but to everyone. You would want them to be that way with you, your spouse, your children, your parents....
If you think I am talking about you, you are right. I am talking to EVERYONE. Every person that reads this, every person who wants to talk about this. I hope you or your loves ones never have a severe brain injury, and if they do I hope they can have a phenomenal recovery.... and I hope everyone including you treats them with the respect they deserve.
Not again, and I hope it never happens to you.
Seriously! I don't understand people.
I have written about this before and I will probably have to write about it again.
My husband Andrew is a brain injury survivor. He had a stroke and other brain injury complications from a car accident. He has recovered way past what we have been told what to expect. He tries hard not to let it keep him back and not to use it for any excuse.
But it is there.... and people are jerks. It doesn't matter if you forgot or don't know people are still jerks.
He is a little bit slow, and he hates that. He hates when people make him feel stupid.... because he is not.
He sometimes needs more explanation or for you to repeat it, but not because of what you said, but just for him so he can understand it. And sometimes he forgot what you said or if you answered his question. That is brain injury. You can never be 100% better.
If he asks you a question to clarify, he is not being rude; even if it comes across that way
His brain thinks either on multiple broken tracks or on one straight track that is ridged and makes since and never changes. If he asks he is not questioning you or how you do it in hopes that you change it, or do it his way: you just set up a road block in his brain and he is only trying to make it make sense. Be kind, have patience, explain it and know it still might not make sense..... he may ask again until it makes does. You should not be that way only to him, but to everyone. You would want them to be that way with you, your spouse, your children, your parents....
If you think I am talking about you, you are right. I am talking to EVERYONE. Every person that reads this, every person who wants to talk about this. I hope you or your loves ones never have a severe brain injury, and if they do I hope they can have a phenomenal recovery.... and I hope everyone including you treats them with the respect they deserve.
I have written about this before and I will probably have to write about it again.
My husband Andrew is a brain injury survivor. He had a stroke and other brain injury complications from a car accident. He has recovered way past what we have been told what to expect. He tries hard not to let it keep him back and not to use it for any excuse.
But it is there.... and people are jerks. It doesn't matter if you forgot or don't know people are still jerks.
He is a little bit slow, and he hates that. He hates when people make him feel stupid.... because he is not.
He sometimes needs more explanation or for you to repeat it, but not because of what you said, but just for him so he can understand it. And sometimes he forgot what you said or if you answered his question. That is brain injury. You can never be 100% better.
If he asks you a question to clarify, he is not being rude; even if it comes across that way
His brain thinks either on multiple broken tracks or on one straight track that is ridged and makes since and never changes. If he asks he is not questioning you or how you do it in hopes that you change it, or do it his way: you just set up a road block in his brain and he is only trying to make it make sense. Be kind, have patience, explain it and know it still might not make sense..... he may ask again until it makes does. You should not be that way only to him, but to everyone. You would want them to be that way with you, your spouse, your children, your parents....
If you think I am talking about you, you are right. I am talking to EVERYONE. Every person that reads this, every person who wants to talk about this. I hope you or your loves ones never have a severe brain injury, and if they do I hope they can have a phenomenal recovery.... and I hope everyone including you treats them with the respect they deserve.
Sunday, October 30, 2016
Fitting in
For a few months I have been feeling pretty bitter about life, about petty things. Or maybe I just tell myself they are petty so they don't bother me as much.
Some of what I have been feeling has gone on for years, and just resurfaces from time toto time. Other aspects, and probably why I have been bitter and angry are new.
One of the things is feeling like I don't fit in. I also believe in being unique, so this is a huge struggle for me. I think it is natural to want to fit in somewhere.
At times I do fit, mostly I feel like I don't. Instead of being inspired I feel jealous and helpless. Every one says women should help build each other up and sometimes theses very women are the ones bringing me down. Most the time I am sure they don't know, I am sure they don't know I wish I had some aspect of their life, I don't have. But all this is besides the point and probably a different story.
I don't know why I really feel like I don't fit in most the time. I often wonder if people see me how I think they see me.
I miss when Avery was in Kindergarten. The parents all met at pickup and I got to know a lot of them and befriend them. The next year they all moved to the back of the school for pickup and I was still at Kindergarten because I was now picking up Miles. At first I felt left out, I didn't get to talk to the same people. I finally opened up and met new parents. The next year I was picking up Miles with 1st grade and got to talk to the same parents.
This year they bring Miles out by 1st grade, so I don't feel like I get to talk to any of the parent friends I have made. It took me until recently to accept this. Not sure why it was so hard to move past it.
The other thing that has been difficult for me is many of the parents I talked to in Avery's grade back in Kindergarten, have all seemed to form a tight friendship. I am always wondering if I lost out the following year, because I was not at pickup? Did I miss out from lack of trying? Was I too busy with Miles and therapy? Did they just assume I was too busy? Or even though they are nice to me, do they just not like me? Also conflicting because most the time **** I don't care if they like me or not, because I am me and I will not change for them. But from time to time it really pisses me off. And at the same time if things changed and I was accepted I will still feel like I don't fit because I am not like them. I will be too busy and I won't have the time or effort to take care of me how I am.
I also feel like I don't fit in because my child with special needs. Everyone loves Miles, but he is different, we have to do things differently, therefore are we not included? Maybe. Are we included to things? Yes sometimes and every time we try it.
My biggest fear is that Avery is not included because of Miles. I strongly believe Avery should do things with and without Miles.
I do feel included in a small support team of other autism parents. Without them I would be insane. We all have a hard time caring for ourselves and need each other. But we are also busy.
Sorry, I am super upset tonight and can't sleep. My ramblings may or may not make sense.
P.S. I am writing to change me, not you.
Some of what I have been feeling has gone on for years, and just resurfaces from time toto time. Other aspects, and probably why I have been bitter and angry are new.
One of the things is feeling like I don't fit in. I also believe in being unique, so this is a huge struggle for me. I think it is natural to want to fit in somewhere.
At times I do fit, mostly I feel like I don't. Instead of being inspired I feel jealous and helpless. Every one says women should help build each other up and sometimes theses very women are the ones bringing me down. Most the time I am sure they don't know, I am sure they don't know I wish I had some aspect of their life, I don't have. But all this is besides the point and probably a different story.
I don't know why I really feel like I don't fit in most the time. I often wonder if people see me how I think they see me.
I miss when Avery was in Kindergarten. The parents all met at pickup and I got to know a lot of them and befriend them. The next year they all moved to the back of the school for pickup and I was still at Kindergarten because I was now picking up Miles. At first I felt left out, I didn't get to talk to the same people. I finally opened up and met new parents. The next year I was picking up Miles with 1st grade and got to talk to the same parents.
This year they bring Miles out by 1st grade, so I don't feel like I get to talk to any of the parent friends I have made. It took me until recently to accept this. Not sure why it was so hard to move past it.
The other thing that has been difficult for me is many of the parents I talked to in Avery's grade back in Kindergarten, have all seemed to form a tight friendship. I am always wondering if I lost out the following year, because I was not at pickup? Did I miss out from lack of trying? Was I too busy with Miles and therapy? Did they just assume I was too busy? Or even though they are nice to me, do they just not like me? Also conflicting because most the time **** I don't care if they like me or not, because I am me and I will not change for them. But from time to time it really pisses me off. And at the same time if things changed and I was accepted I will still feel like I don't fit because I am not like them. I will be too busy and I won't have the time or effort to take care of me how I am.
I also feel like I don't fit in because my child with special needs. Everyone loves Miles, but he is different, we have to do things differently, therefore are we not included? Maybe. Are we included to things? Yes sometimes and every time we try it.
My biggest fear is that Avery is not included because of Miles. I strongly believe Avery should do things with and without Miles.
I do feel included in a small support team of other autism parents. Without them I would be insane. We all have a hard time caring for ourselves and need each other. But we are also busy.
Sorry, I am super upset tonight and can't sleep. My ramblings may or may not make sense.
P.S. I am writing to change me, not you.
Friday, May 6, 2016
6 years after
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.
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, 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.
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