One last post about autism
Someone told me that they are learning as much as they can about autism so that they can better understand what we are dealing with it.
I was really touched by that thought, though I am not sure any one article (or a dozen) can really sum up how autism affects my family. So it dawned on me, maybe I should just write something about it!
So here is my attempt. I actually wrote something about this several weeks ago, and I heavily edited it to not hurt anyone's feelings. I have since decided that this is what it is - so I am just going to post what it is like - without worrying so much about hurt feelings. (Something difficult for the people pleaser in me to do.)
Autism to my family (emphasis on the TO MY FAMILY - we certainly don't speak for others):
- Mike says that autism is like one of those fiber optic lights - like a fiber optic Christmas tree for example. Each strand of fiber is a variation of autism. There is just no one version of it - the strands next to each other can be similar colors or it can be a completely different color stand on the other side of the light. All of this to say: autism is a spectrum. A popular saying in the autism community is "If you know one person with autism, you know one person with autism."
- Autism is a neurological condition that causes my son to learn in a different manner than "typical" kids. He perceives life differently. It can be difficult for him to follow directions, he doesn't always respond to verbal commands or even his name. He is mostly non-verbal. He has sensory processing disorder, and that clouds a lot of what he does. I often think if we can get the sensory processing under some control, Grayson will really shine - even more than he already does. These diagnoses don't define him, but they are part of who he is.
- We rely on conventional medicine for Grayson. He was diagnosed last year by a developmental pediatrician who came highly recommended to us from other parents and doctors. We did do a little homeopathic experimenting but found that it didn't seem to help AT ALL and was really just a waste of our money. (This was the case for US, please note.) He has a team of doctors, therapists, teachers, an aide...all who we rely heavily on. They are Team Grayson. We trust them.
- He has been in private speech therapy for two years and occupational therapy for one year. These sessions often go poorly. They are very stressful. His therapists are WONDERFUL and this is not a reflection on them - or even on Grayson. It is what it is. Most days after therapy is over, I cry all the way home, and he is usually completely exhausted.
- Grayson "stims" by jumping, flapping, hitting his stomach and running. He often does auditory stimming to the same clips of TV shows, movies or songs. His iPad is his most favorite thing ever. No, he does not get it all the time, and even if he did like some other autistic kids I know, I do not judge. (And neither should you by the way.) Whatever works for them and their families.
- It bothers me greatly when GRAYSON is quizzed about stuff he has no control over like he DOES have control over it - like when he will reach the milestones of his peers, why he isn't interacting like expected. It breaks my heart. Yes, he is asked these questions. I know, it's pretty crazy. He understands everything being said to him. He does not need the added pressure. Maybe someday he will be able to answer these questions - but here's the thing - HE IS A FOUR YEAR OLD. If you have questions, ask me or Mike. Out of earshot of our kiddo please. I should add...Being told that he SHOULD be doing things irks both Mike and me - tell us something we don't already know. (Actually please don't - if it's out there, we have heard it.)
- He may not appear to be aware of people, but I believe he is truly aware of everything - he just feels, senses, hears and sees to an overwhelming degree. Can you imagine?
- Sleeping can be difficult for him. He must sleep with either Mike or I - he gets very anxious at night, and it is incredibly hard for him to wind down.
- He talks constantly and often we can catch what he is saying, but not always.
- He attends preschool on an IEP, and he has just the very best, dedicated aide. She's incredible. He has a great teacher and classroom aides also - and he has speech therapy and occupational therapy by the kindest therapists at school too.
- He is attracted to water. It scares me.
- He is a runner. He will be fine for the first ten minutes in a new place, then he will test his boundaries. We often cannot stay more than 10 minutes at a park or playground that is not fenced in.
- Some autism parents see autism like it's a blessing. Others see it like a curse. Honestly I go back and forth. I think Gray is fascinating! I would love to get in his mind. I find his behavior frustrating and difficult though and sometimes I actually pray for a cure. Regardless, I love him EXACTLY the way he is. He is my baby.
- I do think it is a colossal joke in some respects that I am his mom, because I have no patience and very little common sense. Sometimes I ask God what He was thinking and mourn for Gray - because surely there is someone who can do this job better. (And if you don't think that is appropriate to mourn and question God than you probably shouldn't read Psalms.) There is a greater plan, I truly believe that, but sometimes this is a real head-scratcher for me!
- Being excluded from things because my son is considered a liability is heart-breaking.
- Finding other special needs parents has been invaluable for me!! I highly recommend it.
- Getting advice from parents who don't have special needs kiddos about what I should do with my son...ugh...A few times is one thing, but when it is a consistent thing we are dealing with, then that can get frustrating for me. I know what it is like to have a special needs kid so I don't need the articles, the advice, the "hey, have you tried this?" when it is coming from a parent who doesn't know what it's like.
- I LOVE hearing about my friends' kids. I love love love it. I have a typical kiddo too and I also like to brag on his accomplishments from time to time - as I do Grayson! I hope my friends don't stop sharing their stories with me about their kiddos. But when I hear about their trials as typical kids compared to what Grayson's are as an example ie "You have it so much harder than me" - well that gives me pause.
- When Grayson is remembered - on his birthday, on a special occasion, is included in a conversation or greeted like any other person, WOW. That just warms my heart so much! I love it! But with that - how sad is it that I am excited when Grayson is treated normally?
- Being told that my concerns are not valid about my son - oh that burns me. When I am sharing something about Grayson and a VERY REAL concern that I have, I often get told that it's not that bad. A LOT OF PEOPLE tell me this. Good intentions, I guess? Let me address good intentions - I don't often think they are good intentions, but more of people just not knowing what to say. A simple rule of thumb - just don't say anything. I have mostly stopped sharing about Grayson because people's "good intentions" and using that as an excuse to say something hurtful and insensitive???? There are many major things we have experienced that I will no longer share about because people's reactions just kill me. It makes this pregnant mama very mama-bearish.
- Grayson has difficulty with haircuts so we often let his hair grow long - but the comments about that are hard. We have an awesome stylist who will work around his kicking feet and pinching fingers - she does a terrific job! Grayson also only wears soft clothes - he doesn't like anything that has collars, uncomfortable waistbands....a lot of his clothes I purchase second hand because hello, expensive but also because the clothes are more worn in and often quite a bit softer. If you purchase clothes for him and don't see them on him, I apologize but I won't force him to wear something that aggravates him.
- I am VERY happy and open to answering any questions you might have about Grayson or autism. I appreciate when I am asked questions!
So that's what it is like. There are many many many things I am leaving out. But this is the gist of it.
I kind of feel like this is my final thoughts on autism, because I am talking about my son and his life - not my issues and my life. Grayson is so special - he is really just a one of a kind kiddo. We have SO MANY people in our lives who support us, encourage us, and "GET US" - who welcome Grayson into their lives with open arms, and those people are SUCH a blessing to Mike and me. If you are reading this, you know who you are, and we thank you and love you!
I was really touched by that thought, though I am not sure any one article (or a dozen) can really sum up how autism affects my family. So it dawned on me, maybe I should just write something about it!
So here is my attempt. I actually wrote something about this several weeks ago, and I heavily edited it to not hurt anyone's feelings. I have since decided that this is what it is - so I am just going to post what it is like - without worrying so much about hurt feelings. (Something difficult for the people pleaser in me to do.)
Autism to my family (emphasis on the TO MY FAMILY - we certainly don't speak for others):
- Mike says that autism is like one of those fiber optic lights - like a fiber optic Christmas tree for example. Each strand of fiber is a variation of autism. There is just no one version of it - the strands next to each other can be similar colors or it can be a completely different color stand on the other side of the light. All of this to say: autism is a spectrum. A popular saying in the autism community is "If you know one person with autism, you know one person with autism."
- Autism is a neurological condition that causes my son to learn in a different manner than "typical" kids. He perceives life differently. It can be difficult for him to follow directions, he doesn't always respond to verbal commands or even his name. He is mostly non-verbal. He has sensory processing disorder, and that clouds a lot of what he does. I often think if we can get the sensory processing under some control, Grayson will really shine - even more than he already does. These diagnoses don't define him, but they are part of who he is.
- We rely on conventional medicine for Grayson. He was diagnosed last year by a developmental pediatrician who came highly recommended to us from other parents and doctors. We did do a little homeopathic experimenting but found that it didn't seem to help AT ALL and was really just a waste of our money. (This was the case for US, please note.) He has a team of doctors, therapists, teachers, an aide...all who we rely heavily on. They are Team Grayson. We trust them.
- He has been in private speech therapy for two years and occupational therapy for one year. These sessions often go poorly. They are very stressful. His therapists are WONDERFUL and this is not a reflection on them - or even on Grayson. It is what it is. Most days after therapy is over, I cry all the way home, and he is usually completely exhausted.
- Grayson "stims" by jumping, flapping, hitting his stomach and running. He often does auditory stimming to the same clips of TV shows, movies or songs. His iPad is his most favorite thing ever. No, he does not get it all the time, and even if he did like some other autistic kids I know, I do not judge. (And neither should you by the way.) Whatever works for them and their families.
- It bothers me greatly when GRAYSON is quizzed about stuff he has no control over like he DOES have control over it - like when he will reach the milestones of his peers, why he isn't interacting like expected. It breaks my heart. Yes, he is asked these questions. I know, it's pretty crazy. He understands everything being said to him. He does not need the added pressure. Maybe someday he will be able to answer these questions - but here's the thing - HE IS A FOUR YEAR OLD. If you have questions, ask me or Mike. Out of earshot of our kiddo please. I should add...Being told that he SHOULD be doing things irks both Mike and me - tell us something we don't already know. (Actually please don't - if it's out there, we have heard it.)
- He may not appear to be aware of people, but I believe he is truly aware of everything - he just feels, senses, hears and sees to an overwhelming degree. Can you imagine?
- Sleeping can be difficult for him. He must sleep with either Mike or I - he gets very anxious at night, and it is incredibly hard for him to wind down.
- He talks constantly and often we can catch what he is saying, but not always.
- He attends preschool on an IEP, and he has just the very best, dedicated aide. She's incredible. He has a great teacher and classroom aides also - and he has speech therapy and occupational therapy by the kindest therapists at school too.
- He is attracted to water. It scares me.
- He is a runner. He will be fine for the first ten minutes in a new place, then he will test his boundaries. We often cannot stay more than 10 minutes at a park or playground that is not fenced in.
- Some autism parents see autism like it's a blessing. Others see it like a curse. Honestly I go back and forth. I think Gray is fascinating! I would love to get in his mind. I find his behavior frustrating and difficult though and sometimes I actually pray for a cure. Regardless, I love him EXACTLY the way he is. He is my baby.
- I do think it is a colossal joke in some respects that I am his mom, because I have no patience and very little common sense. Sometimes I ask God what He was thinking and mourn for Gray - because surely there is someone who can do this job better. (And if you don't think that is appropriate to mourn and question God than you probably shouldn't read Psalms.) There is a greater plan, I truly believe that, but sometimes this is a real head-scratcher for me!
- Being excluded from things because my son is considered a liability is heart-breaking.
- Finding other special needs parents has been invaluable for me!! I highly recommend it.
- Getting advice from parents who don't have special needs kiddos about what I should do with my son...ugh...A few times is one thing, but when it is a consistent thing we are dealing with, then that can get frustrating for me. I know what it is like to have a special needs kid so I don't need the articles, the advice, the "hey, have you tried this?" when it is coming from a parent who doesn't know what it's like.
- I LOVE hearing about my friends' kids. I love love love it. I have a typical kiddo too and I also like to brag on his accomplishments from time to time - as I do Grayson! I hope my friends don't stop sharing their stories with me about their kiddos. But when I hear about their trials as typical kids compared to what Grayson's are as an example ie "You have it so much harder than me" - well that gives me pause.
- When Grayson is remembered - on his birthday, on a special occasion, is included in a conversation or greeted like any other person, WOW. That just warms my heart so much! I love it! But with that - how sad is it that I am excited when Grayson is treated normally?
- Being told that my concerns are not valid about my son - oh that burns me. When I am sharing something about Grayson and a VERY REAL concern that I have, I often get told that it's not that bad. A LOT OF PEOPLE tell me this. Good intentions, I guess? Let me address good intentions - I don't often think they are good intentions, but more of people just not knowing what to say. A simple rule of thumb - just don't say anything. I have mostly stopped sharing about Grayson because people's "good intentions" and using that as an excuse to say something hurtful and insensitive???? There are many major things we have experienced that I will no longer share about because people's reactions just kill me. It makes this pregnant mama very mama-bearish.
- Grayson has difficulty with haircuts so we often let his hair grow long - but the comments about that are hard. We have an awesome stylist who will work around his kicking feet and pinching fingers - she does a terrific job! Grayson also only wears soft clothes - he doesn't like anything that has collars, uncomfortable waistbands....a lot of his clothes I purchase second hand because hello, expensive but also because the clothes are more worn in and often quite a bit softer. If you purchase clothes for him and don't see them on him, I apologize but I won't force him to wear something that aggravates him.
- I am VERY happy and open to answering any questions you might have about Grayson or autism. I appreciate when I am asked questions!
So that's what it is like. There are many many many things I am leaving out. But this is the gist of it.
I kind of feel like this is my final thoughts on autism, because I am talking about my son and his life - not my issues and my life. Grayson is so special - he is really just a one of a kind kiddo. We have SO MANY people in our lives who support us, encourage us, and "GET US" - who welcome Grayson into their lives with open arms, and those people are SUCH a blessing to Mike and me. If you are reading this, you know who you are, and we thank you and love you!
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