Today is the last day of Autism Awareness Month 2012...but as you all know, Autism doesn't end here for us. Autism Awareness is 24 hours a day, 7 days a week, 365 days a year in our house.
I had the privilege of going into both Brycen and Aubree's classrooms to read a story to the children about Autism and to discuss not only Autism but other disabilities. Those kids were amazing with the questions they asked and the comments they made. My belief is that children are born to accept everybody. They don't know any differently unless someone (typically an adult or older child in their life) encourages them to feel and think differently. So many parents place pressure on the school or other places to teach their children about acceptance of others who are different...but awareness and acceptance start at home. Though I loved the discussion I had with the kindergarteners last Thursday, I can guarantee that 30 minutes of amazing questions and comments cannot trump any beliefs they are being taught at home. If their parents are not accepting of those with disabilities, and they went home and told them "We read about Autism today", their parent may make a rude comment that just trumped everything I talked to them about earlier. Whether it's a phrase or derogatory word a parent or other significant person in a child's life says, or just the actions they take (steering their cart away from someone in a wheelchair at the grocery store or making a rude gesture to that child screaming on the floor), this is how our children learn.
So if there is one thing I want you to take away from Autism Awareness month this year, it is to set an example through your words and your actions for your children and other children that you may have influence on. Teach them that people with disabilities may look or act a little differently, but that does not mean they are any less of a human than the person without a disability. It starts with you! Make this world a better place for our children in the future and promote awareness and acceptance in your own home every day of the year!
Monday, April 30, 2012
Tuesday, April 24, 2012
The Reality of Having a Nonverbal Child
Brycen and his kindergarten friends went on a field trip today to a local nature center. I love how much this school gets the kids out into the community whether it's attending the Homecoming Parade, to the local theater to watch a play, and a big trip to the zoo last Fall. Mike actually had the chance to go on the zoo trip and had tons of fun!
When Brycen came home on the bus today, I attempted to ask him questions about the trip to the nature center. I started with yes and no questions but he was too distracted to answer anything. I showed him his lunchbox and asked him if they ate outside on a picnic but he ignored the question. I asked if he went on a walk with his associate and kindergarten friends, and this caught his attention but he just stared at me. I then asked him if he rode the bus to the center and he finally said "ss" which means "yes." At this time, he had enough of the questions and just wanted to watch a train video like he does on the days he doesn't have therapy after school...he grabbed the video and thrust it into my hands, yelling and pointing at the TV. Of course I knew what he wanted because it's the same thing every time he wants to watch a video so I did as he "requested" after I prompted him to sign/say "please."
I then left the room (of course not very far as I rarely leave the kids in one room together without supervision due to Brycen's aggressive behavior) and my chest felt heavy & my eyes filled with tears. I don't want the kids to see me cry. I don't want myself to cry...but it's inevitable because it's one of those days when reality has hit me. It's slapped me across the face causing a sting that will continue for a long time...reality that the sting I first felt when Brycen lost his language 3 1/2 years ago is still a dull ache, and each of these moments just keep adding to that original pain. It doesn't matter how much I accept "Autism" or how much I know about it or the possibility that someday he will talk again...it still hurts and nobody can tell me to feel differently.
He's almost 6 yrs old. Completed two years of special education preschool and almost one year of kindergarten. Been in consistent speech therapy outside of school for two years. Received an amazing communication device a year ago. Had genetics testing (nothing in results). Sees a psychiatrist who prescribes a daily medicine for him to decrease his anxiety and stimming in hopes of seeing results in his development such as speech.
Nothing has brought his speech back. Nobody can even tell me what to expect with his speech in the future.
I appreciate all of those people involved in all of the above things and the time they have given us to help him improve in many areas! AND I know he has improved in other areas of communication such as gesturing, some simple sounds, eye contact, usage of device to mostly answer questions, and recently a few general comments on the device. But he is still nonverbal. He still can't tell me about his day like other kindergarteners are telling their parents right now about the field trip and all that they did and saw. He can't even say "mom" correctly and without prompts (it comes out like "bom" and he ALWAYS has to be prompted by me to say it).
I'm not saying these things for pity. I don't want you to feel sorry for me...or for him. It is what it is. We don't need sympathy. We need action...we need help...we need understanding...we need support...we need cheerleaders.
I love my son more than anything in this world and I accept him for who he is. But if I was granted one wish today it would be to give my son his voice back. Let me have just a few minutes after these special events so he can tell me what his favorite part of the day was like most other children are able to do. Maybe I'm selfish as maybe he'd prefer to not have a voice and is happy the way it is...but I think every mom has the right to hear "Mom" once in awhile and every parent has the right to have a conversation with their child at the end of the day. That's something every parent looks forward to the day they look into their child's eyes for the first time, right?!
When Brycen came home on the bus today, I attempted to ask him questions about the trip to the nature center. I started with yes and no questions but he was too distracted to answer anything. I showed him his lunchbox and asked him if they ate outside on a picnic but he ignored the question. I asked if he went on a walk with his associate and kindergarten friends, and this caught his attention but he just stared at me. I then asked him if he rode the bus to the center and he finally said "ss" which means "yes." At this time, he had enough of the questions and just wanted to watch a train video like he does on the days he doesn't have therapy after school...he grabbed the video and thrust it into my hands, yelling and pointing at the TV. Of course I knew what he wanted because it's the same thing every time he wants to watch a video so I did as he "requested" after I prompted him to sign/say "please."
I then left the room (of course not very far as I rarely leave the kids in one room together without supervision due to Brycen's aggressive behavior) and my chest felt heavy & my eyes filled with tears. I don't want the kids to see me cry. I don't want myself to cry...but it's inevitable because it's one of those days when reality has hit me. It's slapped me across the face causing a sting that will continue for a long time...reality that the sting I first felt when Brycen lost his language 3 1/2 years ago is still a dull ache, and each of these moments just keep adding to that original pain. It doesn't matter how much I accept "Autism" or how much I know about it or the possibility that someday he will talk again...it still hurts and nobody can tell me to feel differently.
He's almost 6 yrs old. Completed two years of special education preschool and almost one year of kindergarten. Been in consistent speech therapy outside of school for two years. Received an amazing communication device a year ago. Had genetics testing (nothing in results). Sees a psychiatrist who prescribes a daily medicine for him to decrease his anxiety and stimming in hopes of seeing results in his development such as speech.
Nothing has brought his speech back. Nobody can even tell me what to expect with his speech in the future.
I appreciate all of those people involved in all of the above things and the time they have given us to help him improve in many areas! AND I know he has improved in other areas of communication such as gesturing, some simple sounds, eye contact, usage of device to mostly answer questions, and recently a few general comments on the device. But he is still nonverbal. He still can't tell me about his day like other kindergarteners are telling their parents right now about the field trip and all that they did and saw. He can't even say "mom" correctly and without prompts (it comes out like "bom" and he ALWAYS has to be prompted by me to say it).
I'm not saying these things for pity. I don't want you to feel sorry for me...or for him. It is what it is. We don't need sympathy. We need action...we need help...we need understanding...we need support...we need cheerleaders.
I love my son more than anything in this world and I accept him for who he is. But if I was granted one wish today it would be to give my son his voice back. Let me have just a few minutes after these special events so he can tell me what his favorite part of the day was like most other children are able to do. Maybe I'm selfish as maybe he'd prefer to not have a voice and is happy the way it is...but I think every mom has the right to hear "Mom" once in awhile and every parent has the right to have a conversation with their child at the end of the day. That's something every parent looks forward to the day they look into their child's eyes for the first time, right?!
Friday, April 20, 2012
A "Hairy" Success
A couple months ago I shared that Brycen had received a weighted compression vest from Fun & Function after one of his Occupational Therapists had suggested it might be something to help with his sensory issues. We have had some wonderful success with it and I was looking forward to any help we could get to help him conquer the dreaded haircuts. We have worked through 3 home haircuts since receiving the vest...and each time I add in the weights a few minutes prior to starting the haircut.
I am so happy to share that I am confident the vest has helped him work through the sensory issues that were plaguing him during a haircut! I didn't want to share the success until it happened enough times that I was positive it was the contribution of the vest. He has even been so good about haircuts that we were able to add in the use of the electric razor every time which was such a hassled before with one of having to hold him down in order to use it to trim up the edges.
The haircuts still aren't "perfect" per se...he still gets quite fussy and stimmy during the parts around his ears and on his neck...but today he didn't even try to push me away once! He just fussed a little and scratched his hands on his cheeks like he does when he is upset with something, but he worked through it. The good news about using the razor and not having to hold him down or push his hands away any more means we went from a haircut taking 20+ minutes to only 5 minutes AND my stress level has decreased tremendously before, during, and after the haircuts!
I am so happy to share that I am confident the vest has helped him work through the sensory issues that were plaguing him during a haircut! I didn't want to share the success until it happened enough times that I was positive it was the contribution of the vest. He has even been so good about haircuts that we were able to add in the use of the electric razor every time which was such a hassled before with one of having to hold him down in order to use it to trim up the edges.
The haircuts still aren't "perfect" per se...he still gets quite fussy and stimmy during the parts around his ears and on his neck...but today he didn't even try to push me away once! He just fussed a little and scratched his hands on his cheeks like he does when he is upset with something, but he worked through it. The good news about using the razor and not having to hold him down or push his hands away any more means we went from a haircut taking 20+ minutes to only 5 minutes AND my stress level has decreased tremendously before, during, and after the haircuts!
Thursday, April 19, 2012
Fighting Autism One Skill at a Time!
I don't even think I need to explain how amazing this video is! I'm sure the Autism parents, teachers, and therapists that watch this can make a list of how many positive things they see in this 30 second glimpse of what happened at our house this evening. Many people have worked hard over these last couple years to help Brycen with his social skills and other areas...and through this video you can see all of that hard work paying off! These moments are very very rare in our household where Autism seems to take over even the simplest of interactions between our children. Not only are we impressed with Brycen, but the patience and skills that Aubree is demonstrating just shows how much she has internalized over the last couple years of participating in his therapies and our day-to-day life. There is no doubt in my mind that our 3yr old girl will choose a career path in an area that works with those with special needs in some way! These are the moments that continue to push us along this path of building Brycen up to all he can be and continuing our fight against Autism one skill at a time!
Saturday, April 14, 2012
Autism Awareness~Light It Up Blue~No Words Required
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| Maquoketa, IA |
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| Maquoketa, IA |
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| Maquoketa, IA |
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| Alta, IA |
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| Cedar Falls, IA |
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| Duluth, MN |
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| Evansdale, IA |
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| Grimes, IA |
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| La Crescent, MN |
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| La Crosse, WI |
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| Maquoketa, IA |
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| Le Mars, IA |
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| Maquoketa, IA |
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| South Africa |
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| Waukee, IA |
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| Waterloo, IA |
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| Waukon, IA |
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| Concord, CA |
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| Maquoketa, IA |
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| Maquoketa, IA |
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| Maquoketa, IA |
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| Maquoketa, IA |
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| Kansas City |
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| Maquoketa, IA |
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| Evansdale, IA |
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| Evansdale, IA |
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| West Des Moines, IA |
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| Waukee, IA |
Friday, April 13, 2012
Congratulations, Brycen!!
Brycen has officially "graduated" from Occupational and Physical Therapy at the private clinic for his 5 year old skills this week! Great news for him! In Occupational Therapy, he has recently worked on fine motor skills in many areas, muscle tone in his arms, writing his entire name and his grip on the pencil, and identifying/writing his address & phone number. During Physical Therapy over the last 9 months, he has accomplished learning how to pedal, steer, and used the brakes on his bike with training wheels, jumping on both feet, balancing and jumping on each individual foot, balance across a beam, kicking with each foot with aim, and a lot of other stuff. While there are still some skills that other 5 yr olds can do that he can't, we have felt he has caught up enough to his peers that it was time to discharge him from these two therapies. Brycen will continue with his three appts per week of private Speech Therapy as well as his Speech and Occupational Therapy at school.
While this is great news for his development and for our home schedule (going from 8 therapy sessions per week down to 3 is a huge difference in time!), it still presents with some extra emotions for us. The possibility for regression is high for children with Autism, and additionally for children who have already shown regression in their past development. We aren't as worried about this while he is in school because so many of these skills are reinforced consistently throughout the day, but when summer comes it really worries us that he may "forget" some of these skills. Luckily, we have the option to have him re-evaluated at any time if we would be concerned about any regression or when he turns 6 years old and any new skills for that age are not emerging on their own.
Thank you to all of his therapists (and entire team!) over the last several years who have contributed so much to his progressing to this point! Their care & obvious dedication to wanting to help Brycen achieve, and their continuous support to us as his parents are what made this possible. We could NEVER have done it without them!
Thursday, April 12, 2012
Own Little World
Since Brycen began regressing over 3 years ago, not only did he sink into his own little world sometimes, but our entire family did. It's hard not to. I became very depressed and needed to seek out professional help to get through those first few months. We had a hard time even saying the word "Autism" aloud to each other. When using that word, it was like admitting that it was final and at this point could only do so much to help him out. It's not that we didn't have hope for what he could accomplish and overcome, and we read so many stories about children "recovering" from the very serious symptoms of Autism...but deep down we knew it was a life-long battle Brycen had been thrown into.
With all of those emotions overwhelming us, our relationships with others changed and continue to change. Recently I've attempted to break out of my little shell and try new things with Zumba, YMCA, & meeting new people. While I very much enjoy those things and the people I have met, I just can't break away from our "own little world." We can't get just any babysitter for Brycen...we can't go to just any event with him...we have to keep a routine schedule to prevent chaos from happening...we can't go to certain public places with him for fear of his running from us. Unfortunately, this has probably put a little damper on our social lives and we know many people don't really get it. Don't get me wrong, quite a few people do! But when it comes down to the nitty-gritty, I actually have very few people in my physical surroundings that will ever get it.
I'm not ready to throw away all of my past, present, and future relationships because Autism has pushed us into our "own little world", but sometimes a shove here or there is not able to be prevented by me. This ends up meaning as much as we want to keep our life routine as we know that enables Brycen to conquer the days a little better, it's inevitable that our life will also be full of inconsistencies. It may be weeks before I see a good friend or be able to exercise as much as I want to. As much as I want to be motivated to take care of myself and to establish meaningful relationships where I want to be a consistent part of their life, I just don't have as much control over that anymore. Some friends will get it, some won't. Some relationships will continue as consistent as possible, some very sporadic, or some will just fade away. I want to do it all and be it all to everybody, but I know Autism will never allow me to be that way. No matter how much I blog or talk about how Autism affects our life good and bad, I'm not sure anyone (besides other parents of children on the spectrum) will truly get how 24/7 it is.
No one is to blame for those relationships that have faded. Our lives have pulled us in separate directions. The direction we are in and heading to is not going to turn back, so I expect the same will happen with some of the present relationships I have as well as many in the future. I'm not sure if it's some of the lack of social skills rubbing off on me from dealing with Autism 24/7 for years, if it means I am selfish, if it's just being a mother to a special need's child...or maybe a combination of all 3...but it's not really upsetting to me anymore like it was 3 years ago. It's life...it's our "own little world."
With all of those emotions overwhelming us, our relationships with others changed and continue to change. Recently I've attempted to break out of my little shell and try new things with Zumba, YMCA, & meeting new people. While I very much enjoy those things and the people I have met, I just can't break away from our "own little world." We can't get just any babysitter for Brycen...we can't go to just any event with him...we have to keep a routine schedule to prevent chaos from happening...we can't go to certain public places with him for fear of his running from us. Unfortunately, this has probably put a little damper on our social lives and we know many people don't really get it. Don't get me wrong, quite a few people do! But when it comes down to the nitty-gritty, I actually have very few people in my physical surroundings that will ever get it.
I'm not ready to throw away all of my past, present, and future relationships because Autism has pushed us into our "own little world", but sometimes a shove here or there is not able to be prevented by me. This ends up meaning as much as we want to keep our life routine as we know that enables Brycen to conquer the days a little better, it's inevitable that our life will also be full of inconsistencies. It may be weeks before I see a good friend or be able to exercise as much as I want to. As much as I want to be motivated to take care of myself and to establish meaningful relationships where I want to be a consistent part of their life, I just don't have as much control over that anymore. Some friends will get it, some won't. Some relationships will continue as consistent as possible, some very sporadic, or some will just fade away. I want to do it all and be it all to everybody, but I know Autism will never allow me to be that way. No matter how much I blog or talk about how Autism affects our life good and bad, I'm not sure anyone (besides other parents of children on the spectrum) will truly get how 24/7 it is.
No one is to blame for those relationships that have faded. Our lives have pulled us in separate directions. The direction we are in and heading to is not going to turn back, so I expect the same will happen with some of the present relationships I have as well as many in the future. I'm not sure if it's some of the lack of social skills rubbing off on me from dealing with Autism 24/7 for years, if it means I am selfish, if it's just being a mother to a special need's child...or maybe a combination of all 3...but it's not really upsetting to me anymore like it was 3 years ago. It's life...it's our "own little world."
Monday, April 2, 2012
The Difference Between Awareness and Celebrating
The last 24 hours of Autism Awareness has been exhilarating! From seeing all of the beautiful pictures posted by friends of their houses bathed in a blue light bulb to the picture of my friend Ilse's accomplishment of having an entire MOUNTAIN lit in blue in South Africa where she lives. It's amazing just how much support there really is in this world...which is good because Autism is not going away. With the statistics just released this week of 1 in 88 people now being diagnosed (1 in 54 are boys), those numbers are not in anyone's favor. It's reality to say that if you do not already have a family member with Autism now, fairly soon you will. It's not a great statistic. But when we look past that statistic, it is what it is and my son is one of those 54. Though he is a face of Autism, it does NOT define him and what he can do in life.
I thought it might be a good time to talk about the difference between awareness and celebrating when it comes to Autism. Autism is not something we chose for our son...nor would we ever wish Autism on anyone. No doctor can tell me if my son will ever talk again like he had started to before regression at age 2. No doctor can tell me if there are any specific treatments that are beneficial for my son without me just trying them. No doctor can tell me if my child will be able to understand the possibility of going to college, if he will ever live on his own, or if he will get married and have children. The only thing we do know at this point is that there are no guarantees when it comes to Autism. It's all a guess right now and that is why we rely on research to try to give us any and all answers.
April is Autism "Awareness" month...not Autism "Celebration" month. I want everyone to know that I do not and will not celebrate Autism and what it has stolen from my son. If you do choose to celebrate your child's autism, that is fine with me...I will not judge your choice because we all have different philosophies and beliefs in life. My belief is that my son would have more opportunities to participate in life if he did not have Autism. This does not mean I don't love my son for who he is. He has the most contagious smile and giggle...he has a heart that is big enough to love anyone who will attempt to get to know him...he is determined to learn things...he is smart and proud of what he accomplishes. None of these things have anything to do with Autism...they only describe Brycen!
I do choose to celebrate anything my child achieves just like all parents should with their children whether they are neurotypical or have a disability. It's just that sometimes our celebrations for certain milestones come long after many others his age have achieved them...and since doctors can't even tell me if he will achieve some of these, it just makes the celebration so much bigger. So I am not celebrating Autism...but I am celebrating my son's achievements in life! Since I will talk a lot about Autism this month, it's because I want everyone to be aware of what Autism is and how it can affect a typical American family. I want parents in the future to spot the signs earlier than we did and I want them to realize that having a child with Autism is not a "death sentence" for your life or marriage. It just means you will face obstacles that many other parents will not in this world, but that is what will make this journey of life sweeter than anything else.
So please join me in providing awareness this month...not celebration! There is a big difference!
I thought it might be a good time to talk about the difference between awareness and celebrating when it comes to Autism. Autism is not something we chose for our son...nor would we ever wish Autism on anyone. No doctor can tell me if my son will ever talk again like he had started to before regression at age 2. No doctor can tell me if there are any specific treatments that are beneficial for my son without me just trying them. No doctor can tell me if my child will be able to understand the possibility of going to college, if he will ever live on his own, or if he will get married and have children. The only thing we do know at this point is that there are no guarantees when it comes to Autism. It's all a guess right now and that is why we rely on research to try to give us any and all answers.
April is Autism "Awareness" month...not Autism "Celebration" month. I want everyone to know that I do not and will not celebrate Autism and what it has stolen from my son. If you do choose to celebrate your child's autism, that is fine with me...I will not judge your choice because we all have different philosophies and beliefs in life. My belief is that my son would have more opportunities to participate in life if he did not have Autism. This does not mean I don't love my son for who he is. He has the most contagious smile and giggle...he has a heart that is big enough to love anyone who will attempt to get to know him...he is determined to learn things...he is smart and proud of what he accomplishes. None of these things have anything to do with Autism...they only describe Brycen!
I do choose to celebrate anything my child achieves just like all parents should with their children whether they are neurotypical or have a disability. It's just that sometimes our celebrations for certain milestones come long after many others his age have achieved them...and since doctors can't even tell me if he will achieve some of these, it just makes the celebration so much bigger. So I am not celebrating Autism...but I am celebrating my son's achievements in life! Since I will talk a lot about Autism this month, it's because I want everyone to be aware of what Autism is and how it can affect a typical American family. I want parents in the future to spot the signs earlier than we did and I want them to realize that having a child with Autism is not a "death sentence" for your life or marriage. It just means you will face obstacles that many other parents will not in this world, but that is what will make this journey of life sweeter than anything else.
So please join me in providing awareness this month...not celebration! There is a big difference!
Sunday, April 1, 2012
Kick Off to Autism Awareness Month!
April is Autism Awareness Month
In support of our son and all others affected by Autism, the two lights on the outside of our house will be blue for the entire month. We will also be wearing blue tomorrow (April 2) for World Autism Awareness Day. We welcome anyone and everyone to join us in either or both of these events!
In addition to this, I would like to make everyone aware of just how unique Autism is. No child is the same on the spectrum. Just like no child/adult is the same, neither is the approach his or her parents take to treat the symptoms of Autism with their child. Though as different as we and our children are, the similarity still remains that we all want what is best for our child and want them accepted for who he or she is.
The following links are some favorite posts that will show you just how unique each parent's perspective is about certain situations they deal with or want to educate on. The links provided are going to take you to some blogs of my most favorite people in this world. I don't need to physically be with them or talk to them to know how much I adore them and their kiddos...and through all the moves we will make in the upcoming years, these ladies (and a couple gentlemen) will be my constant...my forever friends. They are my online support group that I cherish...for every joy and challenge I have raising a child on the spectrum, they are the ones who will "listen" and give advice that I trust and know is in the best interest of my child.
Thank you and much love...you all know who you are!
Thank you and much love...you all know who you are!
http://katlynnmarlenesmith.blogspot.com/2010/08/i-cant-get-away-from-it.html
http://wildel8y.wordpress.com/2011/09/28/the-price-of-friendship/
http://racersmommy.blogspot.com/2011/04/details-in-autism.html
http://cgregoryrun.blogspot.com/2012/03/floating.html
http://wildel8y.wordpress.com/2011/09/28/the-price-of-friendship/
http://racersmommy.blogspot.com/2011/04/details-in-autism.html
http://cgregoryrun.blogspot.com/2012/03/floating.html
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