Over the past two years I have paid very close attention to who my son bonds with and why. When everyone can seem overwhelming for one reason or another, I can only imagine what people might look like to him at times. Especially when he is already very little and everything must seem large and loud to him. I have watched him react to typical things people do around children and most of the time his reaction is not what people expect simply because he doesn't view everything the same way we do.
An adult might walk into a room and in a loud enthusiastic tone standing tall, say hello to him. He then turns and puts distance between himself and that person. We might be in public and someone will speak to him randomly but he has never seen them before and that first introduction to people is a lot for him to take in. How they look to him, how they smell and yes he will react to a smell even if he isn't close, how they sound, and most of all how they approach him. That first ten seconds if interaction is much more to him than most people realize.
When I realized this it was our first visit from an advocate in October of 2011 and it was the first time I saw him react to a stranger in an extremely positive way since autism came to be. The reason was she walked into the house quietly, she kept her voice low, and even though I had a living room full of furniture she chose to sit on the floor. My son came out of his room and approached her right away without any hint of being intimidated by her. At the end of our visit he was playing with her jewelry and was trying to make eye contact with her. Sometimes he will get right at eye level and tilt his head back to focus on another persons eyes but up until then I had never witnessed him doing this with anyone but our family he sees every day. The reason was simple, she created a comfort zone for him and when it happened I was reminded of how many people he had encountered that were just to much in that first ten seconds. Once I understood this I knew what to expect when he was around people because of how they approached him. I personally even made some adjustments at home to turn life down when he needed it.
Many times this has been mistaken for my son not liking someone or not bonding with someone because they could not understand but at the same time consistency is a big pay off in his life. Even if someone overwhelms him at first the consistency of the person allows him to overcome that. He can get past all of the things that turn him away if he is constantly exposed to it and it breaks down that barrier for him. My teenager daughter has a friend who comes to our home nearly every day. I stress teenagers because teenagers are not quiet, they are the opposite as we all know. Recently my son has started to hug this friend without warning because he likes her and she is a consistent person in our home no matter how loud it gets and these hugs took months to happen.
The way he chooses to acknowledge and show affection to people doesn't just happen right away. If we are spending a day with people he knows but has not consistently been around he might even come across as now being aware they are even there. He is aware and he knows them but the barrier is still there if they are not people who are in his life every day. This is also why when a new therapist works with him at the center it takes time for him to adjust to that person. It's why he is most comfortable with his siblings, therapists, and is just now beginning to allow hugs from grandma and grandpa who are now consistent instead of a couple visits a year when we lived far away.
Looking back to when we lived in Montana and I would tell my son grandma and grandpa were coming for visit, there was never a reaction from him like you would expect from a 3 year old about to see his far away grandparents. Even when they walked in the door he would often hide for bit but when the visits became closer together with a quiet approach he began to express himself. Now we leave the autism center and every single day consistently he asks to go see grandma and grandpa, although he doesn't always acknowledge them when we get there he will allow hugs and kisses and that is enormous progress.
Tuesday, September 24, 2013
Sunday, September 22, 2013
Be Grateful
As an autism parent I constantly see people with children around me who take things for granted. I notice not because I see them as ungrateful but because at times I wonder if they are grateful. They often seem unaware of what it might be like to have to adjust in ways only an autism parent would understand. They aren't ungrateful because of course they love their children, they just at times seem oblivious to how different it could really be. Here is a list of the things I have noticed along this journey that I have often wanted to tell someone just how grateful they might want to be.
1. Having a conversation with their child.
I was once standing in line at a Ross and a very chatty 4 year old was in line with mom ahead of me. He had so much to say and mom quickly told him to stop talking. If a child can be chatty and express what is going on in their mind, be grateful.
2. Sitting in a cart at the grocery store while a parent reads labels.
I almost always see this scenario and this is one I have never experienced with my son. If a child is able to even stay anxiety free and calm in a grocery store, be grateful.
3. Parents talking about a child's favorite foods.
Typically parents will talk about a variety of foods their child likes or dislikes. If a child has accepted a variety of foods to begin with, be grateful.
4. Taking a child to see the latest Disney movie or family event in general.
If a child can process the world without extreme anxiety,be grateful.
5. Getting a babysitter.
If you are able to leave your child with others to maintain a social life of your own, for the love of God be grateful.
6. A child talking back to a parent and getting themselves a time out.
If a child has the ability to express that stubborn streak with words, of course address it but be grateful.
7. Potty training and how quickly a child is catching on.
If a child has the ability to sit long enough to master this life skill quickly, be grateful.
8. A child having a friend over to play.
Be grateful.
9. A child dressed themselves that day and their clothes don't match.
If a child can put their own clothes on without help, be grateful.
10. A child being enrolled in mainstream sports or typical programs such as swimming lessons early on.
Not an option for some to incorporate right away, be grateful.
11. Getting a child's attention simply by saying their name one time.
I often have to get in front of my son and create a disruption as to what he is focused on. Saying his name one time happens but not often, be grateful.
12. Knowing what a child's favorite book is.
Some children struggle to sit through an entire book let alone are able to say which is a favorite, be grateful.
13. Singing songs together in the car to a child's new favorite song over and over.
I have listened to parents complain about this and roll their eyes about the song of choice. Some parents would give the world to sing a really bad song on repeat with their child, be grateful.
14. A child using a fork or spoon to eat.
Be grateful
15. Temper tantrum at home for not getting what they want.
Many parents just want to be able to leave home without their child falling apart and can't even express what they want, be grateful.
None of these differences make a parent ungrateful and all of these things go unnoticed as a blessing to most people. It's life as they know it just as autism is life as we know it but at the same time as I have sat and listened to these things come up, I stay very quiet. I can reflect back to when my teenagers where little but I cannot relate when it comes to my child with autism. It's just not the same parenting world, it truly changes how a parent views the world around them. Many times I wish I could introduce that way of thinking to others without autism forcing it to happen. Be grateful and aware of the blessings around you, large or small, because some are experiencing life a very different way.
1. Having a conversation with their child.
I was once standing in line at a Ross and a very chatty 4 year old was in line with mom ahead of me. He had so much to say and mom quickly told him to stop talking. If a child can be chatty and express what is going on in their mind, be grateful.
2. Sitting in a cart at the grocery store while a parent reads labels.
I almost always see this scenario and this is one I have never experienced with my son. If a child is able to even stay anxiety free and calm in a grocery store, be grateful.
3. Parents talking about a child's favorite foods.
Typically parents will talk about a variety of foods their child likes or dislikes. If a child has accepted a variety of foods to begin with, be grateful.
4. Taking a child to see the latest Disney movie or family event in general.
If a child can process the world without extreme anxiety,be grateful.
5. Getting a babysitter.
If you are able to leave your child with others to maintain a social life of your own, for the love of God be grateful.
6. A child talking back to a parent and getting themselves a time out.
If a child has the ability to express that stubborn streak with words, of course address it but be grateful.
7. Potty training and how quickly a child is catching on.
If a child has the ability to sit long enough to master this life skill quickly, be grateful.
8. A child having a friend over to play.
Be grateful.
9. A child dressed themselves that day and their clothes don't match.
If a child can put their own clothes on without help, be grateful.
10. A child being enrolled in mainstream sports or typical programs such as swimming lessons early on.
Not an option for some to incorporate right away, be grateful.
11. Getting a child's attention simply by saying their name one time.
I often have to get in front of my son and create a disruption as to what he is focused on. Saying his name one time happens but not often, be grateful.
12. Knowing what a child's favorite book is.
Some children struggle to sit through an entire book let alone are able to say which is a favorite, be grateful.
13. Singing songs together in the car to a child's new favorite song over and over.
I have listened to parents complain about this and roll their eyes about the song of choice. Some parents would give the world to sing a really bad song on repeat with their child, be grateful.
14. A child using a fork or spoon to eat.
Be grateful
15. Temper tantrum at home for not getting what they want.
Many parents just want to be able to leave home without their child falling apart and can't even express what they want, be grateful.
None of these differences make a parent ungrateful and all of these things go unnoticed as a blessing to most people. It's life as they know it just as autism is life as we know it but at the same time as I have sat and listened to these things come up, I stay very quiet. I can reflect back to when my teenagers where little but I cannot relate when it comes to my child with autism. It's just not the same parenting world, it truly changes how a parent views the world around them. Many times I wish I could introduce that way of thinking to others without autism forcing it to happen. Be grateful and aware of the blessings around you, large or small, because some are experiencing life a very different way.
Tuesday, September 17, 2013
Forget the Autism Stigma
Every morning I sit down with my coffee and log into my computer to look up the latest autism news. I read the latest information and some inspiring stories but something happens almost each and every time that makes my brain shut down. Not only shut down but I want to sit down with the writer and beg them to stop forcing people to create an idea of autism that so many kids and adults do not fit into.
The information might be interesting and the story a nice read but then we hit the part the writer decides to describe autism, just in case someone lives in a cave totally cut off from the outside world and hasn't heard of it yet, they quickly jump to the autism stigma that is so frustrating for some. They explain autism as a disability that is on the rise and that's fact but then they jump to the autism description that is consistently pushed into the minds of everyone. Autism struggles with empathy, expressing feelings, acts out in meltdowns sometimes violent, struggles with social cues and we all know the rest. We are constantly fed stories about autism in the media and many of the stories that grab the attention of the media are just not what many of us experience in our homes.
My son has autism. He has never acted out violently or even led anyone to believe he would. He has never bitten me or thrown anything in a fit of rage. He cares very much about how the people around him feel to an impressive level. Not an impressive level for being autistic, an impressive level as a human being. He has a great sense of humor even with limited communication and that's a hard thing to get across when you can't speak. He expresses his feeling just like all of us do because he feels just like all of us do. When he walks into a room he isn't aware he struggles socially, not yet anyway, but the people in the room have been taught to believe he will. They see him as socially challenged but he does not. The way autism is described creates the idea he isn't what he is expected to be by society, which in turn creates the challenge. People hold that stigma and expect it after all it's what they have been taught to expect from autism.
I always find a ton of irony on articles that will state no two cases are alike and then jump to a list of autism traits. I often wonder how can we push such a direct list of traits on society when not every autistic fits. Or are just flat out completely misunderstood. Not every parent is struggling so much with autism they are suicidal or contemplating murder to escape the autism challenges but we see it in the media way to often. Yes, autism is hard and it's more work than a parent expects. It's draining and just keeping up mentally and physically is by far one of the biggest challenges I have ever faced in this life. It's a daily effort that has to be handled with love and patience but my child is not a robot. He is not lost in an alter universe and he is not what many of these articles describe him to be. I also know I am not the only parent who feels this way. Many parents and autistic adults will read the description of autism and sink a bit, because it causes more harm than good in society. Getting to know someone with autism is the best way to know what autism brings to that individual and each will in fact be very different.
Forget what you read about what autism is supposed to be like. Forget the stigma pushed upon us all daily. Forget the label of being socially lacking compared to the rest of us. The only way a child with autism feels socially challenged is by being treated differently. If an article says no two are alike than treat people with autism exactly that way, just like the rest of the people in the world. Like every single one of us on earth. All different and something to offer everyone in some way if we allow it to happen.
The information might be interesting and the story a nice read but then we hit the part the writer decides to describe autism, just in case someone lives in a cave totally cut off from the outside world and hasn't heard of it yet, they quickly jump to the autism stigma that is so frustrating for some. They explain autism as a disability that is on the rise and that's fact but then they jump to the autism description that is consistently pushed into the minds of everyone. Autism struggles with empathy, expressing feelings, acts out in meltdowns sometimes violent, struggles with social cues and we all know the rest. We are constantly fed stories about autism in the media and many of the stories that grab the attention of the media are just not what many of us experience in our homes.
My son has autism. He has never acted out violently or even led anyone to believe he would. He has never bitten me or thrown anything in a fit of rage. He cares very much about how the people around him feel to an impressive level. Not an impressive level for being autistic, an impressive level as a human being. He has a great sense of humor even with limited communication and that's a hard thing to get across when you can't speak. He expresses his feeling just like all of us do because he feels just like all of us do. When he walks into a room he isn't aware he struggles socially, not yet anyway, but the people in the room have been taught to believe he will. They see him as socially challenged but he does not. The way autism is described creates the idea he isn't what he is expected to be by society, which in turn creates the challenge. People hold that stigma and expect it after all it's what they have been taught to expect from autism.
I always find a ton of irony on articles that will state no two cases are alike and then jump to a list of autism traits. I often wonder how can we push such a direct list of traits on society when not every autistic fits. Or are just flat out completely misunderstood. Not every parent is struggling so much with autism they are suicidal or contemplating murder to escape the autism challenges but we see it in the media way to often. Yes, autism is hard and it's more work than a parent expects. It's draining and just keeping up mentally and physically is by far one of the biggest challenges I have ever faced in this life. It's a daily effort that has to be handled with love and patience but my child is not a robot. He is not lost in an alter universe and he is not what many of these articles describe him to be. I also know I am not the only parent who feels this way. Many parents and autistic adults will read the description of autism and sink a bit, because it causes more harm than good in society. Getting to know someone with autism is the best way to know what autism brings to that individual and each will in fact be very different.
Forget what you read about what autism is supposed to be like. Forget the stigma pushed upon us all daily. Forget the label of being socially lacking compared to the rest of us. The only way a child with autism feels socially challenged is by being treated differently. If an article says no two are alike than treat people with autism exactly that way, just like the rest of the people in the world. Like every single one of us on earth. All different and something to offer everyone in some way if we allow it to happen.
Sunday, September 15, 2013
When Autism Comes to Dinner
Autism can have an affect on the entire family and the way we all prepare for events, even the little ones. Yesterday was my oldest son's 15th birthday and trying to find some kind of fun we could have for the day was a difficult task. Not because there are no fun things to do but because I have to consider how those things will effect my youngest son. I had many things going through my mind as ways to spend to spend the day, zoo, aquarium, trip the city, all things I had to take into consideration might end up a huge fail. The what ifs start to flood my mind and although I hate to say it, the what if was what if it all goes wrong and my son's birthday is taken down by his little brothers autism. Not by his little brother but by how he is overwhelmed so easily. He loves his little brother like crazy but we are all very familiar with what could happen.
I asked my son what he would like to do and not many ideas rolled out. I don't know if that was due to what may come of it or just lack of interest, after all he is 15, so lack of interest is realistic at this age. What he decided on was a simple trip out to dinner and I use the word simple lightly because nothing is ever so simple with autism involved. He chose a place we had been to as a family once before and it did not go well. Red Robin and Red Robin is loud and busy with a lot of things to process. At the same time there aren't a lot of places to eat he could have chosen that wouldn't have been loud and busy. The good part was we had been there before and although it ended badly I knew Phillip had already processed a lot of the restaurant once and that makes a difference. He just does not forget so a second introduction is never as difficult as the first.
This is when the biggest affect kicked in, the mention of possibly leaving my youngest behind to avoid what might come of it. My oldest, Presly, knew we had a 50/50 chance of dinner ending very badly, early, or me just flat out having the leave the other kids at the table to explore quietly. It has happened so many times we all know this is part of the process. A sit down restaurant just does not happen often as a family because it's hard. I understood where he was coming from because I also feel the same anxiety and it was a bit heartbreaking to know leaving one child behind for a birthday dinner was truly floating around in our minds and yes, I had already considered it myself.
We did not, we all went and today I am extremely grateful we pushed through that concern. You see Phillip often surprises us and yesterday was one of those times. The hostess first wanted to seat us at a round table and I quickly knew that was a big trigger for challenges so asked if we could somehow be seated in a booth. The booth is much easier to keep my son from wanting to wander off or run away from us to explore and she gladly did that for us. Thankfully she found us a booth tucked into a corner which was another blessing because people all around him in every direction talking and moving is just another trigger. The corner prevented the noise and movement from flooding his mind. A table in a restaurant that is wide open and in the middle of all the chaos is like inviting autism to come out and play and sometimes autism doesn't play quietly or in a designated area.
What came of this birthday dinner, other than an obscene bill, was a fantastic dinner with a fantastic group of kids. Phillip sat with some crawling around and a couple of attempts to escape but for the most part he was more relaxed than any of us expected. The dinner was full of smiles, laughter, and the birthday young man was able to enjoy his birthday burger just as he wanted to. For the first time possibly ever, we slowly finished our food and then sat for a bit talking before the bill was paid. That never happens, we rush and often no one really finishes. Many times someone has to lead little brother out of the restaurant before the bill even comes. Challenges are always pushing when autism comes to dinner but yesterday autism was not in charge and having Phillip with us in such a state of peace was like life giving his big brother a special gift for his birthday. Even showing us all leaving him behind would have stolen a moment we didn't know was coming and I don't think any of us would have wanted to miss it for the world. We need those moments as a family desperately because it reminds us to keep fighting together. It also reminds us that when we feel defeated, we are not.
We have pushed through some very hard things together and every second of it makes a difference. Not just for us as a family but for a little boy who doesn't deserve to be left behind. He needs to be there and at the end of the day I was a bit upset with myself for even considering leaving him behind. We would have missed one of the best moments we have had together in a very long time. Next time may not go as well but I do know the thought of leaving him behind will not crawl into my mind so easily again. In fact I think all of use had a large dose of faith restored in us and in no way want to miss an opportunity like that again. We have all worked to hard for it. I was reminded of a Disney movie that used to be on repeat day after day in my home when my older children were little and the saying, OHANA....family and nobody gets left behind! No matter what kind of challenges come we face them together because if we don't, how in the world can we ever overcome them when it really is each other that has gotten us this far.
I asked my son what he would like to do and not many ideas rolled out. I don't know if that was due to what may come of it or just lack of interest, after all he is 15, so lack of interest is realistic at this age. What he decided on was a simple trip out to dinner and I use the word simple lightly because nothing is ever so simple with autism involved. He chose a place we had been to as a family once before and it did not go well. Red Robin and Red Robin is loud and busy with a lot of things to process. At the same time there aren't a lot of places to eat he could have chosen that wouldn't have been loud and busy. The good part was we had been there before and although it ended badly I knew Phillip had already processed a lot of the restaurant once and that makes a difference. He just does not forget so a second introduction is never as difficult as the first.
This is when the biggest affect kicked in, the mention of possibly leaving my youngest behind to avoid what might come of it. My oldest, Presly, knew we had a 50/50 chance of dinner ending very badly, early, or me just flat out having the leave the other kids at the table to explore quietly. It has happened so many times we all know this is part of the process. A sit down restaurant just does not happen often as a family because it's hard. I understood where he was coming from because I also feel the same anxiety and it was a bit heartbreaking to know leaving one child behind for a birthday dinner was truly floating around in our minds and yes, I had already considered it myself.
We did not, we all went and today I am extremely grateful we pushed through that concern. You see Phillip often surprises us and yesterday was one of those times. The hostess first wanted to seat us at a round table and I quickly knew that was a big trigger for challenges so asked if we could somehow be seated in a booth. The booth is much easier to keep my son from wanting to wander off or run away from us to explore and she gladly did that for us. Thankfully she found us a booth tucked into a corner which was another blessing because people all around him in every direction talking and moving is just another trigger. The corner prevented the noise and movement from flooding his mind. A table in a restaurant that is wide open and in the middle of all the chaos is like inviting autism to come out and play and sometimes autism doesn't play quietly or in a designated area.
What came of this birthday dinner, other than an obscene bill, was a fantastic dinner with a fantastic group of kids. Phillip sat with some crawling around and a couple of attempts to escape but for the most part he was more relaxed than any of us expected. The dinner was full of smiles, laughter, and the birthday young man was able to enjoy his birthday burger just as he wanted to. For the first time possibly ever, we slowly finished our food and then sat for a bit talking before the bill was paid. That never happens, we rush and often no one really finishes. Many times someone has to lead little brother out of the restaurant before the bill even comes. Challenges are always pushing when autism comes to dinner but yesterday autism was not in charge and having Phillip with us in such a state of peace was like life giving his big brother a special gift for his birthday. Even showing us all leaving him behind would have stolen a moment we didn't know was coming and I don't think any of us would have wanted to miss it for the world. We need those moments as a family desperately because it reminds us to keep fighting together. It also reminds us that when we feel defeated, we are not.
We have pushed through some very hard things together and every second of it makes a difference. Not just for us as a family but for a little boy who doesn't deserve to be left behind. He needs to be there and at the end of the day I was a bit upset with myself for even considering leaving him behind. We would have missed one of the best moments we have had together in a very long time. Next time may not go as well but I do know the thought of leaving him behind will not crawl into my mind so easily again. In fact I think all of use had a large dose of faith restored in us and in no way want to miss an opportunity like that again. We have all worked to hard for it. I was reminded of a Disney movie that used to be on repeat day after day in my home when my older children were little and the saying, OHANA....family and nobody gets left behind! No matter what kind of challenges come we face them together because if we don't, how in the world can we ever overcome them when it really is each other that has gotten us this far.
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