With two children on the end of the spectrum where verbal skills are minimal and using the bathroom independently is a never ending battle, progress is bittersweet at times. I hear so much about parents who are new to this adventure and they seem to be struggling with the same things we are STILL working on a decade later. I do truly measure my angels progress in much more than test scores and age equivalents (http://wheresyourpantsautism.blogspot.com/2014/04/how-do-you-measure-progress.html), but now that we are closer to adulthood than toddlerhood I am starting to look at things differently.
My 12 year old is entering puberty and still watches Sesame Street and Blues Clues. For crying out loud, he masterbates and needs deodorant, but still needs to hold my hand at all times to ensure safety. My 9 year old still doesn't talk, although she is a wizard with her Dynavox. For years people have been telling me, "I heard of this one child who started talking at age____." I think this ship may have sailed on our end of the spectrum. I am not sitting in "woe as me" land and I am not in a fit of depression about where they are at developmentally. I just see a huge shift in my thinking about what is important and what we need to do to make sure they are as independent and happy as they can be. I am thinking about the skills they need to read and write at a functional level and to make sure they can work with money at some point (or at least understand the concept of spending.) I want to make sure they can tell someone their name and address (or at least our phone number.) I don't care if they know state capitals or can name our first president. They don't need to learn proper grammar, but instead how to ask for what they need in a way everyone can understand. They need to know how to clean their dishes and make their own sandwich. Maybe even use a microwave so they can warm their food. I still think the sky is the limit in terms of the progress to be made, we are just on a different path.
I find myself researching places like Juniper Hills or life skills colleges instead of early intervention and new services. I don't go to every conference related to autism and don't read every book available. I prefer to read stories of those farther along on this journey than we are. What do you do with a teenager with autism? I like those stories. They are few and far between really. So much focus is on the little ones and early intervention. This is important, in fact crucial as the rate of diagnosis soars. I think I am simply saying goodbye to this stage of life. I am future bound instead of fix it bound. It is a good place to be. I think I am getting used to it here.
Sunday, May 25, 2014
Sunday, May 4, 2014
A sense of community in an unusual place
I recently started to blog again and this time added the Facebook page/Twitter account component. I thought it would be a great outlet to laugh, celebrate and complain about things most of my friends, coworkers and family cannot understand or relate to.
The one thing I wasn't expecting was to find such a sense of community. I am not always the most social person. I don't like girls night outs, book clubs, luncheon pot lucks at work, neighborhood gatherings, etc. For a good time I enjoy a long run (alone) or a night out with my husband enjoying a great dinner or a concert. I have great friends, but I like to keep my circle small. I like to chat when I am at the gym, school, or other social events, but I really don't want to share in small talk or the other conversations as much as everyone else seems to. There is nothing wrong with any of the above, but they are really just not my thing and they never have been. I am happy with things the way they are as it is the quality, not quantity of conversations and people that matter.
With that being said, the sense of community found while creating this new blog and Facebook page has been surprisingly gratifying in a way I did not expect. I am laughing at the fact that other folks know as much about poop as I do, laugh at the fact their children prefer not to wear clothes, and are equally as sleep deprived as I. I knew this writing and sharing would be cathartic for me, but I didn't think that I would relish the recurring visitors, nor would frequent the same pages I so enjoy. I have never been a big Facebook person who posts pictures of their food or tells about every moment of their day, but I have posted more on my page in the last month than I have on my personal page since it began.
My interest started by reading what other people post and write about. I have always enjoyed following others- Effin' Autism, Autism Hippie, Autism with a side of fries, Autism Daddy and Mutha Lovin' Autism are a few of my favorites. I like them all for different reasons whether I agree with what they say or not. The authors of these pages/blogs are a part of a very important community that I have started to hold near and dear.
I used to go to a support group or two and they were wonderful. I have many cherished friendships that have developed as a result. They are fantastic and I am grateful to have some autism moms on my local team. This virtual support is equally valuable and I am glad I have arrived. A little late to the party, but better than not coming at all.
Gotta go, I have another naked kiddo to chase down!
The one thing I wasn't expecting was to find such a sense of community. I am not always the most social person. I don't like girls night outs, book clubs, luncheon pot lucks at work, neighborhood gatherings, etc. For a good time I enjoy a long run (alone) or a night out with my husband enjoying a great dinner or a concert. I have great friends, but I like to keep my circle small. I like to chat when I am at the gym, school, or other social events, but I really don't want to share in small talk or the other conversations as much as everyone else seems to. There is nothing wrong with any of the above, but they are really just not my thing and they never have been. I am happy with things the way they are as it is the quality, not quantity of conversations and people that matter.
With that being said, the sense of community found while creating this new blog and Facebook page has been surprisingly gratifying in a way I did not expect. I am laughing at the fact that other folks know as much about poop as I do, laugh at the fact their children prefer not to wear clothes, and are equally as sleep deprived as I. I knew this writing and sharing would be cathartic for me, but I didn't think that I would relish the recurring visitors, nor would frequent the same pages I so enjoy. I have never been a big Facebook person who posts pictures of their food or tells about every moment of their day, but I have posted more on my page in the last month than I have on my personal page since it began.
My interest started by reading what other people post and write about. I have always enjoyed following others- Effin' Autism, Autism Hippie, Autism with a side of fries, Autism Daddy and Mutha Lovin' Autism are a few of my favorites. I like them all for different reasons whether I agree with what they say or not. The authors of these pages/blogs are a part of a very important community that I have started to hold near and dear.
I used to go to a support group or two and they were wonderful. I have many cherished friendships that have developed as a result. They are fantastic and I am grateful to have some autism moms on my local team. This virtual support is equally valuable and I am glad I have arrived. A little late to the party, but better than not coming at all.
Gotta go, I have another naked kiddo to chase down!
Friday, April 25, 2014
It's only a season...
Many times in life my father has told me, "It's only a season." He said this as a teen when I was sad over a boy. He said this when I was in college and stressed out over homework and grades. He said this when I moved to Arizona on a whim in my early 20's and changed my mind. He said this when I was indecisive over changing college majors. He said this when my son was diagnosed with autism and again when my daughter was. He said this many times over the years when I experienced difficult times in life, money, family and other troubles.
Great advice that I didn't always receive well. There were moments when it angered me as much as the phrases, "God only gives you what you can handle," "it's all relative" or "it could be worse."
I had a moment today on my drive home where for the first time in my almost 39 years where I said this phrase to myself. This has been a tough week at our house. We received some news about our children's progress and placement change. We have had some financial issues that require attention and a few more things that make the phrase, "when it rains it pours" sadly applicable.
I am sad. My husband is sad. I have been crying off and on for a few days now. I need this down time. I deserve this down time. I never truly grieved when our children were diagnosed. I was upset, but was immediately hoisted into the drivers seat to blaze our trail. I did it with gusto and don't have any regrets, but now is a time when I (we) need to regroup.
We didn't chose autism, but we made the decision to take on the therapies, driving and all the effort it takes to ensure the best for our children. We could settle for less as it would be so much easier, but that has never been an option for my husband and I. We will drive anywhere and jump through any hoops necessary if it helps our children. I am not willing to put effort into therapies, schools or strategies that don't yield success, but this next phase in life is a good option. It is just change that has an enormous impact on every aspect of our lives. I am sad my son needs to take a step back to maximize his learning, but it is okay. I want him to be as strong and happy as he can no matter where that level is. As for my daughter, this is a good change for her as well. I am grateful for a program that can meet both of their needs and individualize strategies to cater to each of their strengths.
This change is going to present some huge challenges and I doubt I am done crying. This will be a test for our family. I guess I need to remember those words my father will certainly say when I tell him what is going on, "It's only a season." Maybe I should do my best to shift my emotion from sadness and frustration to relief and perhaps happiness if we weather the storm when it is over.
I think it may be time for me to try and embrace the concept I have heard a million times, "It is only a season." This is just a shift, not a big move. I don't need to be the annoying voice saying, "there is always a silver lining," but I think it is time to look at this as a "season". I don't know if I need my umbrella or snow boots, but I am in. Totally and completely in. Let the adventure begin!
Sunday, April 13, 2014
How do you measure progress?
How do you measure progress? How do you quantify success?
To even obtain a diagnosis you have to go through a great deal of evaluations and measures of performance. It just is what it is and we need to go through this to get services much of the time. It is an overwhelming process that can make one feel as though they are swimming upstream in a sea of chaos. Test scores, ranges of average, eligible scores, etc. The list goes on and on and the numbers can make your head spin.
I am a special education teacher and I am immersed in evaluations and outcome measures all day long. Refer, test, report, repeat. Great families, amazing kids and wonderful co-workers. That is my teacher hat and I love it!
At home, when I put on my autism mommy sombrero things look a little different. I am on the opposite side of the table listening to others quantify success and measure progress with test scores. Both of the kids go through an annual testing process that involves many standardized checklists and evaluations. In addition, every 90 days the team meets to go over the Individual Treatment Plan where we review progress and add/adjust outcomes. It is nice that I have a say in what is worked on and this breaks down to many hours spent in meetings. It is NEVER stressful and I am grateful that I have a voice in the plan and that they help us make sure we have some maintenance and generalization at home.
I was never surprised by either of my children's autism diagnosis. I knew it in my gut long before the reports were written. On the other hand, I will never forget the first time a psychologist explained to me that not only does my son have an autism spectrum disorder (299.00 in the DSM), but also the axis II diagnosis of mental retardation (318.00 in the DSM). I immediately burst in to tears and told them to continue as I wiped my eyes. It wasn't his delivery, he was just doing his job. I wasn't even surprised. It just stings...
After 9 years of these evaluations, diagnostic criteria, measures of skills met and age levels of performance, I really don't care. I am not woe as me in my corner focused on the news delivered. I am not shaken up by the fact that my 8 year old has the verbal skills of an infant or that my 12 year old writes like a preschooler. Neither one is toilet trained and frankly they are both very globally delayed.
We look at progress differently. It is not all about numbers.
My daughter uses a Dynavox to talk now. One of my favorite memories was when she used her "words" (this is what we call her Dynavox) at the pediatrician's office. When the doctor came in to say "hi" and I told her to say "hi" back, she didn't push the "hello" button. Instead, she hit the "goodbye" button and pushed him away. She did not want to be there and she made sure we knew that. The two of us laughed and appreciated her sassiness. That's my girl!
My son has become so good at requesting items that he can string together 5-7 words to ask for McDonald's or a cookie. This was a child who couldn't do anything but use the sign for "more" at the age of 3. He can now say, "I want McDonalds." We will say "no" and he will say, "I want yellow McDonalds please." We still say "no" and he says, "I want more yellow McDonalds fries please." At this point we often cave. Way to go buddy!
I understand that we need the numbers to get services and to maintain funding and that is fine. I am not sad, they are always better than the year before and that is grand.
Our normal measures progress in smiles and laughter and we have an abundance of that in our household. Life is pretty good. Celebrate the little things...
To even obtain a diagnosis you have to go through a great deal of evaluations and measures of performance. It just is what it is and we need to go through this to get services much of the time. It is an overwhelming process that can make one feel as though they are swimming upstream in a sea of chaos. Test scores, ranges of average, eligible scores, etc. The list goes on and on and the numbers can make your head spin.
I am a special education teacher and I am immersed in evaluations and outcome measures all day long. Refer, test, report, repeat. Great families, amazing kids and wonderful co-workers. That is my teacher hat and I love it!
At home, when I put on my autism mommy sombrero things look a little different. I am on the opposite side of the table listening to others quantify success and measure progress with test scores. Both of the kids go through an annual testing process that involves many standardized checklists and evaluations. In addition, every 90 days the team meets to go over the Individual Treatment Plan where we review progress and add/adjust outcomes. It is nice that I have a say in what is worked on and this breaks down to many hours spent in meetings. It is NEVER stressful and I am grateful that I have a voice in the plan and that they help us make sure we have some maintenance and generalization at home.
I was never surprised by either of my children's autism diagnosis. I knew it in my gut long before the reports were written. On the other hand, I will never forget the first time a psychologist explained to me that not only does my son have an autism spectrum disorder (299.00 in the DSM), but also the axis II diagnosis of mental retardation (318.00 in the DSM). I immediately burst in to tears and told them to continue as I wiped my eyes. It wasn't his delivery, he was just doing his job. I wasn't even surprised. It just stings...
After 9 years of these evaluations, diagnostic criteria, measures of skills met and age levels of performance, I really don't care. I am not woe as me in my corner focused on the news delivered. I am not shaken up by the fact that my 8 year old has the verbal skills of an infant or that my 12 year old writes like a preschooler. Neither one is toilet trained and frankly they are both very globally delayed.
We look at progress differently. It is not all about numbers.
My daughter uses a Dynavox to talk now. One of my favorite memories was when she used her "words" (this is what we call her Dynavox) at the pediatrician's office. When the doctor came in to say "hi" and I told her to say "hi" back, she didn't push the "hello" button. Instead, she hit the "goodbye" button and pushed him away. She did not want to be there and she made sure we knew that. The two of us laughed and appreciated her sassiness. That's my girl!
My son has become so good at requesting items that he can string together 5-7 words to ask for McDonald's or a cookie. This was a child who couldn't do anything but use the sign for "more" at the age of 3. He can now say, "I want McDonalds." We will say "no" and he will say, "I want yellow McDonalds please." We still say "no" and he says, "I want more yellow McDonalds fries please." At this point we often cave. Way to go buddy!
I understand that we need the numbers to get services and to maintain funding and that is fine. I am not sad, they are always better than the year before and that is grand.
Our normal measures progress in smiles and laughter and we have an abundance of that in our household. Life is pretty good. Celebrate the little things...
Friday, April 4, 2014
I'M MAYOR OF THIS TOWN!
"I'M MAYOR OF THIS TOWN!"
I will never forget the first time those words came out of my mouth. It was about 4 years ago when we were doing at home ABA with Little pants and I was having a disagreement with our lead therapist over finding some balance with ABA and keeping her in the ECSE placement part time. I was confident that she needed both and they could be successful as long as I was facilitating the communication between the two and making sure they supplemented one another. The school was ready to serve and was recommending more days of class. The lead ABA therapist was hell bent on only participating in their programming. Both sides forgot that we still had private occupational and speech therapy, but both sides were truly rooting for my daughter. They just forgot that sometimes there is more than one party involved. As a teacher, I see this happen a lot. No one side is bad. It just boils down to philosophical differences.
"I AM MAYOR OF THIS TOWN!" I screamed over the phone to the lead therapist when I was explaining why this was the road we WERE in fact going to take. Seriously, was I going to listen to someone question my parenting choices and tell me how to educate and treat my child's autism? Was I going to listen to this head strong therapist, who wasn't even a parent (nevertheless a parent of a child with autism), tell me that maybe my parenting styles just don't match my child's needs?
Hell no! I AM MAYOR OF THIS TOWN!
To make this long story short, I took the issue to the clinical supervisors who were happy to listen to how I wanted to do things and at the end of the day we kept Little pants in her school program. Her ECSE teacher and speech therapist came to my house to observe therapy (and brought me a Starbucks!). Both sides were curious of what the other was teaching and at the end of the day it worked out. I only kept her in ECSE programming for a couple years and I have no regrets. We now have a combination of ABA, speech therapy, occupational therapy and education all in one through the ABA therapy program. We chose to take both of our children with autism out of the public school system for a variety of reasons, but that is another blog all together.
I think that the relationship between the public school system and ABA service providers has improved some over the years, but back then there were some individuals on both ends that just couldn't see the forest through the trees about why an eclectic approach was best for my little girl. They both just didn't completely understand what the other was about and how they can benefit children. I get it, ABA isn't what you do at school and vise versa. I have heard it a million times and by the way, I was an ABA therapist in college and a special education teacher by trade. Sheesh- if anyone gets it, I am pretty sure I do! I really think the push from the lead therapist at the time was coming out of ignorance for what the school was actually providing. I really don't think that the two half days a week I was planning on keep my daughter at school was going to inhibit any progress in ABA. At the end of the day I was right! Little pants flourished in both settings.
Here's the thing- autism is a spectrum disorder, so why wouldn't I utilize a spectrum of therapies to treat the issues?
I would like to point out that this was one small hiccup with the ABA service provider we have. They are AMAZING and I am grateful for everything they have done. This error was on behalf of the individual therapist only and she no longer works for their organization.
I have always been comfortable standing up for what I think is right and have never feared trying new things. Advocating for my children is no different, but when the going gets tough and you are in those first years of diagnosis and early intervention, one's confidence can be low. The combination of grief and mommy guilt can wear on even the most confident of souls.
What I have learned from this is simple- I know what is best for my kiddos. I don't need to follow the same path as other parents or do what everyone else suggests. I have my own instincts that make me a very formidable mayor and I will scream it at the top of my lungs any time I need to do so.
I AM MAYOR OF THIS TOWN! Don't question the choices I make for my children or suggest I do it any other way. No one knows what is best for them as much as I do. You can be an expert on anything you want, but don't you dare tell me you are an expert on my children.
Disclaimer- my husband has had an equal voice and we have always agreed. He just isn't as vocal. :)
I will never forget the first time those words came out of my mouth. It was about 4 years ago when we were doing at home ABA with Little pants and I was having a disagreement with our lead therapist over finding some balance with ABA and keeping her in the ECSE placement part time. I was confident that she needed both and they could be successful as long as I was facilitating the communication between the two and making sure they supplemented one another. The school was ready to serve and was recommending more days of class. The lead ABA therapist was hell bent on only participating in their programming. Both sides forgot that we still had private occupational and speech therapy, but both sides were truly rooting for my daughter. They just forgot that sometimes there is more than one party involved. As a teacher, I see this happen a lot. No one side is bad. It just boils down to philosophical differences.
"I AM MAYOR OF THIS TOWN!" I screamed over the phone to the lead therapist when I was explaining why this was the road we WERE in fact going to take. Seriously, was I going to listen to someone question my parenting choices and tell me how to educate and treat my child's autism? Was I going to listen to this head strong therapist, who wasn't even a parent (nevertheless a parent of a child with autism), tell me that maybe my parenting styles just don't match my child's needs?
Hell no! I AM MAYOR OF THIS TOWN!
To make this long story short, I took the issue to the clinical supervisors who were happy to listen to how I wanted to do things and at the end of the day we kept Little pants in her school program. Her ECSE teacher and speech therapist came to my house to observe therapy (and brought me a Starbucks!). Both sides were curious of what the other was teaching and at the end of the day it worked out. I only kept her in ECSE programming for a couple years and I have no regrets. We now have a combination of ABA, speech therapy, occupational therapy and education all in one through the ABA therapy program. We chose to take both of our children with autism out of the public school system for a variety of reasons, but that is another blog all together.
I think that the relationship between the public school system and ABA service providers has improved some over the years, but back then there were some individuals on both ends that just couldn't see the forest through the trees about why an eclectic approach was best for my little girl. They both just didn't completely understand what the other was about and how they can benefit children. I get it, ABA isn't what you do at school and vise versa. I have heard it a million times and by the way, I was an ABA therapist in college and a special education teacher by trade. Sheesh- if anyone gets it, I am pretty sure I do! I really think the push from the lead therapist at the time was coming out of ignorance for what the school was actually providing. I really don't think that the two half days a week I was planning on keep my daughter at school was going to inhibit any progress in ABA. At the end of the day I was right! Little pants flourished in both settings.
Here's the thing- autism is a spectrum disorder, so why wouldn't I utilize a spectrum of therapies to treat the issues?
I would like to point out that this was one small hiccup with the ABA service provider we have. They are AMAZING and I am grateful for everything they have done. This error was on behalf of the individual therapist only and she no longer works for their organization.
I have always been comfortable standing up for what I think is right and have never feared trying new things. Advocating for my children is no different, but when the going gets tough and you are in those first years of diagnosis and early intervention, one's confidence can be low. The combination of grief and mommy guilt can wear on even the most confident of souls.
What I have learned from this is simple- I know what is best for my kiddos. I don't need to follow the same path as other parents or do what everyone else suggests. I have my own instincts that make me a very formidable mayor and I will scream it at the top of my lungs any time I need to do so.
I AM MAYOR OF THIS TOWN! Don't question the choices I make for my children or suggest I do it any other way. No one knows what is best for them as much as I do. You can be an expert on anything you want, but don't you dare tell me you are an expert on my children.
Disclaimer- my husband has had an equal voice and we have always agreed. He just isn't as vocal. :)
Sunday, March 30, 2014
Autism Awareness Month- The Good, Bad and Ugly
Autism mom disclaimer...I would like to start off by saying I am NOT anti-autism awareness or against any sort of fundraising or awareness seeking efforts. We have a dedicated month and/or day for just about everything these days and autism is no different. I like the idea of raising awareness for autism and any other disability or cause out there. I also respect other opinions on how they feel about this day and what they chose to support.
Good: As we all know, April is Autism Awareness Month and that April 2nd is considered World Autism Awareness Day. I love this time of year! For one, it is finally spring in Minnesota so bring on the Vitamin D and happiness! Also, I love that autism is not a low incidence disability and we "have the floor" to spread awareness and bring attention to a well deserving cause. It brings about all kinds of conversations regarding autism, including- research, education, therapy, funding, legislative action, family support, and insurance. These are all not only good conversations to have, they are FABULOUS! In many ways it can bring communities together. Last year, I made a ridiculous amount of pulled pork with homeade barbeque sauce for my husband's office and people paid a per plate fee as well as other donations and we gave that to a local organization that funds the schooling and therapy my children receive. It felt AMAZING to do that and it was fun for my husband to have his work crew come and celebrate the awareness he was trying to spread. We have done a walk or two this time of year and that has been fun too. I prefer the autism 5K in May though as it is much warmer :) Spread the autism love and awareness in April! We live the life 24/7, but I will take a month of recognition and awareness. That works.
Bad: The unfortunate part of all this celebration and reaching out to spread awareness is that is shows what a segregated community we actually are. There is always a little dissension in any group and there is room for all opinions and value systems. My issue with all of this is due to the fact that within the autism community there is almost too much discord and it is not helping our cause at all. I spent much of my adult life working with children and families with special needs and have been immersed in disabilities most of my life. I can honestly say the autism community ranks high on the list of "most infighting among a disability community." There are a few others that are right up, for example, the deaf hard of hearing community has some separation between those who want to hear via cochlear implant and those who want to remain as they are and stay strong. It isn't a right or wrong thing, it is more a passion about what you believe in thing. This is the part that goes bad. When your passion about what you believe leads you to a place where you no longer respect or appreciate what others are doing it has, in my opinion, went wrong. I think one of the reasons for all of this friction is because of the numbers- 1 in 68, that really makes our community large, which in turn opens the door to more opinions and emotions. I get that, but what I don't get is the animosity. This brings me to the ugly.
Ugly: This is my least favorite part of the awareness campaign. Hot button topics include- vaccinations, Autism Speaks, Jenny McCarthy, ABA, medications, and the hits just keep coming. I don't care if you vaccinated your child or not. I did and would do it again. I did my research and my husband and I made the choice we felt was right. I don't hate Autism Speaks, but I wish people would educate themselves more before they prolifically cry out for everyone to Light it up Blue! The campaign for World Autism Awareness Day and Light it up Blue is created by Autism Speaks, which is not a bad thing, but the autism symbol isn't just blue. The puzzle piece associate with Autism Speaks is blue, but that is the only blue thing going on with autism awareness. There is nothing wrong with this at all- just my daily soapbox on educating yourself on the causes you support. Autism Speaks has their flaws as does any large scale non profit organization. They do great things as well. I will put out my blue light. I love to raise awareness. If nothing else, it brings up the topic with my neighbors, which is great. As for World Autism Awareness day, well our family LOVES to celebrate so we find any excuse to do so. This is just another day to get some yummy food and hang out as a family. We figure, why not? It shows our 10 year old, who is NOT on the spectrum, that sometimes autism gives us a reason to have fun. These are the Pants family reasons to celebrate- very individualized. :) We typically chose to support our local autism resources that we have sought out to help us with what we need. I want to give back to those organizations that have helped us so much! That is just our choice though- again, very individualized!
So in summary, light it up blue, color the world, whatever you chose to do to bring awareness for autism in the month of April. If I may be so bold, could we all use this as an opportunity to quit the hate mongering of those that chose a different path. This is a spectrum disorder so expect and tolerate a spectrum of ideas and opinions. Be grateful we have a community with so many wonderful families with stories of success, tragedy, drama and comedy to share. We are all on the same team, can't we all just get along? The road of a family dealing with autism is stressful enough, so I will close with some of my favorite words of the Beatles-
Bad: The unfortunate part of all this celebration and reaching out to spread awareness is that is shows what a segregated community we actually are. There is always a little dissension in any group and there is room for all opinions and value systems. My issue with all of this is due to the fact that within the autism community there is almost too much discord and it is not helping our cause at all. I spent much of my adult life working with children and families with special needs and have been immersed in disabilities most of my life. I can honestly say the autism community ranks high on the list of "most infighting among a disability community." There are a few others that are right up, for example, the deaf hard of hearing community has some separation between those who want to hear via cochlear implant and those who want to remain as they are and stay strong. It isn't a right or wrong thing, it is more a passion about what you believe in thing. This is the part that goes bad. When your passion about what you believe leads you to a place where you no longer respect or appreciate what others are doing it has, in my opinion, went wrong. I think one of the reasons for all of this friction is because of the numbers- 1 in 68, that really makes our community large, which in turn opens the door to more opinions and emotions. I get that, but what I don't get is the animosity. This brings me to the ugly.
So in summary, light it up blue, color the world, whatever you chose to do to bring awareness for autism in the month of April. If I may be so bold, could we all use this as an opportunity to quit the hate mongering of those that chose a different path. This is a spectrum disorder so expect and tolerate a spectrum of ideas and opinions. Be grateful we have a community with so many wonderful families with stories of success, tragedy, drama and comedy to share. We are all on the same team, can't we all just get along? The road of a family dealing with autism is stressful enough, so I will close with some of my favorite words of the Beatles-
Oh
Come together
Yeah come together
Yeah come together
Yeah come together
Yeah come together
Yeah come together
Yeah come together
Yeah oh
Come together
Yeah come together
Come together
Yeah come together
Yeah come together
Yeah come together
Yeah come together
Yeah come together
Yeah come together
Yeah oh
Come together
Yeah come together
Okay, I am done now. I hope I didn't offend. I just want this to be a reminder that we can all be on the same team. Let's take the month of April to forget about our opinions on vaccinations, therapies, theories, etc. Let's just raise our glass and cheers to the wonderful world of parenting children with autism and do the best we can for the community where we belong!
GO AUTISM AWARENESS!
Thank you and good night!
Saturday, March 29, 2014
HELL YAH!!! We will go to the store!
Big pants asked me earlier, "I want to go to the grocery store." Okay, not really asking, but since he has never actually asked a question, I had to go with his intonation. This is how we know he is asking for something. He also asked three times.
I jumped out of my seat, "What? You asked me for something outside of food and television?" What? You asked to go to a place outside of the zoo and swimming?"
HELL YAH!!! We will go to the store!
After my initial excitement over this novel request tamed, we got ready and headed out. After all, I always have a list. I'm a mom and that's my job :) In my elated state I did head out in my slippers, but caught that in time and put on different shoes. We headed to Target, on a Saturday afternoon no less. This is what I would call a tiny little chunk of hell on any other Saturday, but today, sure, lets hit it!
Quick backstory- we used to take the kiddos out to do errands on a regular basis, now we don't do it at all unless we have to. We don't get to spend a ton of time as a family so when we do we would prefer to go to the fore mentioned zoo and YMCA. When I am home alone I cannot take all three kiddos out alone due to safety, elopement and all that jazz. I am lucky enough to have time to shop on my own most of the time.
I would first like to mention that this is a historical moment for us. Big pants doesn't ask for things outside of his basic wants and needs and once they are met he will not ask another. He doesn't wonder or make statements about things out loud. I am sure he thinks them, but he isn't a sharing kind of guy. So this request, which was paired with his happy dance after I said yes, was an unusual request. Take what you get when you get it, right?
Well when we got there, I don't really think he knew what he had requested. He grabbed my arm and held on for dear life. He was agitated when we walked in and got our cart. I didn't even make time for my usual Starbucks before shopping. I had to ask him to use his words and tell me what he wanted. He just kept scripting something unknown even louder. I suggested we go look at the Easter candy first and he was sort of okay with that. It took a while, but he calmed slightly. In the meantime, I had a cart full of goodies and yes, I bought them! I had him push the cart and help me make some simple choices to keep him engaged. I had a short list and time to spare. We hit the toy aisle for a new puzzle and the movie aisle for a new DVD. On another note, that Elmo must be a rich guy. He has a DVD on EVERYTHING and I am pretty sure we own them all!
During this time I wondered to myself- why don't we do this more? I typically run errands by myself so when we do go out an about we can do fun stuff. Why can't Target be fun? I know I love it and spend plenty of time and money there. Just as I lost myself in this thought, I remembered why I hate taking him shopping. Waiting in the checkout line. Grrrr... I steered us to one and he pushed the cart the other direction so we kept looking at things. I thought this was a good sign. We came full circle back to the checking lanes and waited in the shortest line. I had my fingers crossed so tight that we would leave the store on a good note. He was loud and moving everywhere he shouldn't, but it was okay. I had him unload our cart and tried to engage him with some questions. He didn't answer me, but he was able to take the items out. I had to remind him to stay by me a million times, but he made it without a meltdown! WOO HOO! Time to celebrate! It is always easier to leave them home and when I have a $300 list I will go alone and get my coffee. On these random Saturdays when I forget a few things or if he ever asks again (I hope he does), it is important to NOT just do what is easy. After 9 years into autism we have gotten a little, dare I say, lazy with doing certain things. It is not okay for me to use the excuse, "it is just easier not to." Well I can use it, but not abuse it, right?
We talk about teachable moments all the time. Today was a learning moment for mom. Slow down, step out of the easy and try it again. Shopping has been an epic fail in the past and chances are it will be again, but who cares about the stares and go for it! It was a short trip, full of tons of vocal stimming, toe walking and general autism quirks, but it went well. I don't know if Big pants will ask again, but if he does I am jumping to my feet to hit the aisles again!
I jumped out of my seat, "What? You asked me for something outside of food and television?" What? You asked to go to a place outside of the zoo and swimming?"
HELL YAH!!! We will go to the store!
After my initial excitement over this novel request tamed, we got ready and headed out. After all, I always have a list. I'm a mom and that's my job :) In my elated state I did head out in my slippers, but caught that in time and put on different shoes. We headed to Target, on a Saturday afternoon no less. This is what I would call a tiny little chunk of hell on any other Saturday, but today, sure, lets hit it!
Quick backstory- we used to take the kiddos out to do errands on a regular basis, now we don't do it at all unless we have to. We don't get to spend a ton of time as a family so when we do we would prefer to go to the fore mentioned zoo and YMCA. When I am home alone I cannot take all three kiddos out alone due to safety, elopement and all that jazz. I am lucky enough to have time to shop on my own most of the time.
Well when we got there, I don't really think he knew what he had requested. He grabbed my arm and held on for dear life. He was agitated when we walked in and got our cart. I didn't even make time for my usual Starbucks before shopping. I had to ask him to use his words and tell me what he wanted. He just kept scripting something unknown even louder. I suggested we go look at the Easter candy first and he was sort of okay with that. It took a while, but he calmed slightly. In the meantime, I had a cart full of goodies and yes, I bought them! I had him push the cart and help me make some simple choices to keep him engaged. I had a short list and time to spare. We hit the toy aisle for a new puzzle and the movie aisle for a new DVD. On another note, that Elmo must be a rich guy. He has a DVD on EVERYTHING and I am pretty sure we own them all!
During this time I wondered to myself- why don't we do this more? I typically run errands by myself so when we do go out an about we can do fun stuff. Why can't Target be fun? I know I love it and spend plenty of time and money there. Just as I lost myself in this thought, I remembered why I hate taking him shopping. Waiting in the checkout line. Grrrr... I steered us to one and he pushed the cart the other direction so we kept looking at things. I thought this was a good sign. We came full circle back to the checking lanes and waited in the shortest line. I had my fingers crossed so tight that we would leave the store on a good note. He was loud and moving everywhere he shouldn't, but it was okay. I had him unload our cart and tried to engage him with some questions. He didn't answer me, but he was able to take the items out. I had to remind him to stay by me a million times, but he made it without a meltdown! WOO HOO! Time to celebrate! It is always easier to leave them home and when I have a $300 list I will go alone and get my coffee. On these random Saturdays when I forget a few things or if he ever asks again (I hope he does), it is important to NOT just do what is easy. After 9 years into autism we have gotten a little, dare I say, lazy with doing certain things. It is not okay for me to use the excuse, "it is just easier not to." Well I can use it, but not abuse it, right?
We talk about teachable moments all the time. Today was a learning moment for mom. Slow down, step out of the easy and try it again. Shopping has been an epic fail in the past and chances are it will be again, but who cares about the stares and go for it! It was a short trip, full of tons of vocal stimming, toe walking and general autism quirks, but it went well. I don't know if Big pants will ask again, but if he does I am jumping to my feet to hit the aisles again!
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