According to the Merriam Webster Dictionary, to accept (in various contexts of course) means to receive willingly; to give approval for; to endure without protest or reaction; to regard as proper, normal, or inevitable; and to recognize as true.
Interestingly enough, I think I have officially come to a place of acceptance with autism. At least according to this definition. I may not like most of what autism has to offer my children and acceptance has taken a while to find. I do willingly accept the challenge on both good days and bad. I approve of the diagnosis. I am never in doubt that my children have autism. I endure the path parenting has taken me, although I do protest at times. I am not a saint! I don't know how normal autism is, but who is normal anyway? For us, ASD is our normal and I can certainly accept that!
Friday, April 23, 2010
Thursday, April 22, 2010
Siblings and the Spectrum
I read an article this morning regarding the emotional impact having a sibling on the spectrum can create. There was nothing really extraordinary about the article's contents or sources, it all seemed pretty basic and obvious. Nothing I have not read before. There are a lot of resources available to aid parents in explaining autism to their neuro-typical children. I question the validity of these resources as much as I do any parenting book and magazine. I am not sure these kind of "how-to" books really help at all. You cannot tell people how to parent by writing a book, only experience can dictate that path as far as I am concerned. In terms of autism, how can any read encapsulate all of the emotional maturity needed by a sibling of a child with any disability. I know parenting books are meant to be used as guides, but I have never been a big fan.
I worry as much about Zoe's future as I do Max and Avery's. The fact that it is more likely my children with autism will outlive me is staggering at times. I worry about the quality of therapists and caregivers when I am right here at home, the thought of who will be their primary caregiver after I am gone takes my breath away EVERY time it crosses my mind. Not only do I worry about who will properly care for Max and Avery, but the burden this puts on Zoe. She will have a healthy responsibility on her hands and I feel bad for putting that on her as the only sibling. There isn't even anyone to share in the duties. Of course I do not know what the future brings and where Max and Avery will work and grow up, but one things is for sure they will need to be looked over directly or indirectly and after I take my last breath I guess Zoe gets to take over. Scary and sad at times.
On the other hand, all of the stress and sacrifice that Zoe endures will also make her a more caring and compassionate individual. She has already had to deal with more in her 7 years than many children will ever have to handle. She struggles with why her brother and sister have autism and how that changes her world, but overall her heart is big and her smile wide. She gets mad and angry at what she has to give up, but she will be the first to tell you why her brother cannot handle loud noise and bright lights or why her sister sometimes says the same thing over and over. You certainly cannot learn those life lessons in Parents magazine or any book that is for sure!
I worry as much about Zoe's future as I do Max and Avery's. The fact that it is more likely my children with autism will outlive me is staggering at times. I worry about the quality of therapists and caregivers when I am right here at home, the thought of who will be their primary caregiver after I am gone takes my breath away EVERY time it crosses my mind. Not only do I worry about who will properly care for Max and Avery, but the burden this puts on Zoe. She will have a healthy responsibility on her hands and I feel bad for putting that on her as the only sibling. There isn't even anyone to share in the duties. Of course I do not know what the future brings and where Max and Avery will work and grow up, but one things is for sure they will need to be looked over directly or indirectly and after I take my last breath I guess Zoe gets to take over. Scary and sad at times.
On the other hand, all of the stress and sacrifice that Zoe endures will also make her a more caring and compassionate individual. She has already had to deal with more in her 7 years than many children will ever have to handle. She struggles with why her brother and sister have autism and how that changes her world, but overall her heart is big and her smile wide. She gets mad and angry at what she has to give up, but she will be the first to tell you why her brother cannot handle loud noise and bright lights or why her sister sometimes says the same thing over and over. You certainly cannot learn those life lessons in Parents magazine or any book that is for sure!
Thursday, April 15, 2010
The End is Bittersweet
The primary thing on my mind these days is the big move of services to the new MAC center. With all of the change and planning taking place I am now realizing the bittersweet nature of this farewell. I will miss the day to day contact with all the staff, snack time, and seeing how proud and excited the kids get when they finally "get it" during programming. I think I forgot how lucky I have been to be so greatly involved in each aspect of their life every single day.
I will miss so many of the therapists that have become a part of our family in a way. The company has specific rules in place to try and avoid boundary issues, but it is hard to not become attached. One member of the team has been with us since the beginning and I cannot imagine going a day without connecting with her. Others have been with us for years and even work with both kiddos. Of course not all therapists have made such an impact, but the vast majority have been amazing. They come to work and try so very hard to get the most from Max and Avery and do so well even on the "off" days. I am so blessed to have had so many wonderful, compassionate and dedicated individuals come through our home. The smiles on the kids' faces speak volumes when it is time to work. I am sure the ones that will be with us in the future are going to be equally great, but the reality is that they have some seriously big shoes to fill. The current staff is great! In fact it is the best group we have ever had in place. There isn't one dud in the bunch! :) I will miss them all dearly and if Max and Avery cold put their feelings into words I am sure they would concur. This is truly a bittersweet goodbye!
I will miss so many of the therapists that have become a part of our family in a way. The company has specific rules in place to try and avoid boundary issues, but it is hard to not become attached. One member of the team has been with us since the beginning and I cannot imagine going a day without connecting with her. Others have been with us for years and even work with both kiddos. Of course not all therapists have made such an impact, but the vast majority have been amazing. They come to work and try so very hard to get the most from Max and Avery and do so well even on the "off" days. I am so blessed to have had so many wonderful, compassionate and dedicated individuals come through our home. The smiles on the kids' faces speak volumes when it is time to work. I am sure the ones that will be with us in the future are going to be equally great, but the reality is that they have some seriously big shoes to fill. The current staff is great! In fact it is the best group we have ever had in place. There isn't one dud in the bunch! :) I will miss them all dearly and if Max and Avery cold put their feelings into words I am sure they would concur. This is truly a bittersweet goodbye!
Wednesday, April 14, 2010
Back to work?
With Max and Avery going to the center soon and Zoe heading into 2nd grade next year the option of my working again has finally come. I am excited about this opportunity as my professional aspirations have always been high. I have not worked full time since I was pregnant with Avery and even that was short lived. I love every minute of the time I have spent home with my angels and wouldn't change a thing. You only get one chance to watch your kids grow up and although it was out of necessity that I stay home full time, it has been the best decision. I always figured I would work part time while the kids are small and go back to work when they are ready. Autism and the journey we have embarked on changed those plans drastically.
I have been looking into part time jobs and full time jobs. It seems scary to enter the job world again and I know I would not be picking up where I left off. I left a very rewarding profession and although I didn't get enough time to truly be established (in my eyes), it made a big impact on my life. The surreal part for me is that as a special education teacher, my work so closely resembles my life. That makes for an entire new set of challenges, but on the other hand, I have more to offer. I look forward to the future, but will cherish the time spent home. Who knows maybe I will be busier than I think and I will continue to run this ship from home. We shall see...
This summer though, I am spending quality time with my sweet Zoe as she has taken the back seat too many times with the crazy home life we took on for the past three years. I look forward to a little freedom in our schedule and lots of fun times!
I have been looking into part time jobs and full time jobs. It seems scary to enter the job world again and I know I would not be picking up where I left off. I left a very rewarding profession and although I didn't get enough time to truly be established (in my eyes), it made a big impact on my life. The surreal part for me is that as a special education teacher, my work so closely resembles my life. That makes for an entire new set of challenges, but on the other hand, I have more to offer. I look forward to the future, but will cherish the time spent home. Who knows maybe I will be busier than I think and I will continue to run this ship from home. We shall see...
This summer though, I am spending quality time with my sweet Zoe as she has taken the back seat too many times with the crazy home life we took on for the past three years. I look forward to a little freedom in our schedule and lots of fun times!
Thursday, April 8, 2010
Why Can't We All Play Nice?
I am so blessed to live in an area where the options for autism therapies and services are almost endless. One would assume it is easy to piece together services for their children in an ala carte manner specific to their needs and level of ASD. People move to MN to receive the "cadillac" level of care we have access to at the school, medical and county arenas. So my question remains... Why can't we all play nice?
It is one of my greatest frustrations that the providers cannot get it together enough to truly collaborate in a professional manner that is in the best interest of the child. I love our ABA provider, but their lack of flexibility when working with the school district or other outside direct therapies like Speech and OT is ridiculous. Why would anyone put all of their eggs in one basket with so many services available? ASD is a spectrum disorder, which by my logic means that there is going to be a spectrum of therapies and techniques needed to help our children learn and grow.
Parents need to be involved and advocate for their children, but this becomes more challenging when you have to battle and implore these individuals to work together. I want each of these entities to think what they are offering is the best of the best and I want teachers and therapist to be uber passionate about their jobs, but when do these people realize that I am the ONLY one who is an expert on my child and it is up to me to decide what is best for them. After all... I am mayor of this town!
I am having such a hard time getting our ABA provider to work with our school. I feel like I have to make a choice and am backed into a corner doing so. It is really frustrating, even for me who is a very strong advocate for my children. I have never been afraid to speak up on my kids' behalf, but even I am exhausted with this situation. I am eager to have the kids start the center and move on, but I want to hang on to the school for Avery and I will have to fight tooth and nail to make that work. For Max, school is not an option so it is a no-brainer decision, but for Avery it is not so clear. I am gonna stick to my guns though and do my best. I just don't understand why I can't have a little of both. If I am willing to do the work so should they. Ah yes, the battle continues. Stay tuned!
It is one of my greatest frustrations that the providers cannot get it together enough to truly collaborate in a professional manner that is in the best interest of the child. I love our ABA provider, but their lack of flexibility when working with the school district or other outside direct therapies like Speech and OT is ridiculous. Why would anyone put all of their eggs in one basket with so many services available? ASD is a spectrum disorder, which by my logic means that there is going to be a spectrum of therapies and techniques needed to help our children learn and grow.
Parents need to be involved and advocate for their children, but this becomes more challenging when you have to battle and implore these individuals to work together. I want each of these entities to think what they are offering is the best of the best and I want teachers and therapist to be uber passionate about their jobs, but when do these people realize that I am the ONLY one who is an expert on my child and it is up to me to decide what is best for them. After all... I am mayor of this town!
I am having such a hard time getting our ABA provider to work with our school. I feel like I have to make a choice and am backed into a corner doing so. It is really frustrating, even for me who is a very strong advocate for my children. I have never been afraid to speak up on my kids' behalf, but even I am exhausted with this situation. I am eager to have the kids start the center and move on, but I want to hang on to the school for Avery and I will have to fight tooth and nail to make that work. For Max, school is not an option so it is a no-brainer decision, but for Avery it is not so clear. I am gonna stick to my guns though and do my best. I just don't understand why I can't have a little of both. If I am willing to do the work so should they. Ah yes, the battle continues. Stay tuned!
Tuesday, April 6, 2010
Big Changes Ahead...
Well in about a month the kids start their center based ABA services. I am so excited to see them move on to the next step and continue their journey. It will be so good for both Max and Avery in so many ways. At this point I am thinking they will need about 2 years of therapy at the center. This is a really big step for our whole family. Big changes ahead....
I get my house back to "normal" and my kids get to venture off into the next phase of their education and therapy. We are so blessed in so many ways. I am scared the center may not be a good fit or not a good enough fit for the sacrifices we are making to accommodate their schedule. I fear that it may be good for one child and not the other too. Thinking back though, I have been scared every step of the way so far. First, after Max's initial diagnosis, I was scared to up and move and leave family while I was 7 mos pregnant. Then I was nervous about hauling a newborn and 2 1/2 y/o around to therapy appointments and school with Max. I was also afraid when we were about to open our home and lives to daily therapy. When we learned Avery also had autism, I panicked about having to go through this stress for TWO kids! Suffice it to say, this whole adventure has me filled with trepidation with each new step that comes along. I should remember though, we made it through everything so far, so this new phase will work too. Things really do have a way of always working out! Who knows, maybe I will even regain my career again at some point. The options are endless.
I get my house back to "normal" and my kids get to venture off into the next phase of their education and therapy. We are so blessed in so many ways. I am scared the center may not be a good fit or not a good enough fit for the sacrifices we are making to accommodate their schedule. I fear that it may be good for one child and not the other too. Thinking back though, I have been scared every step of the way so far. First, after Max's initial diagnosis, I was scared to up and move and leave family while I was 7 mos pregnant. Then I was nervous about hauling a newborn and 2 1/2 y/o around to therapy appointments and school with Max. I was also afraid when we were about to open our home and lives to daily therapy. When we learned Avery also had autism, I panicked about having to go through this stress for TWO kids! Suffice it to say, this whole adventure has me filled with trepidation with each new step that comes along. I should remember though, we made it through everything so far, so this new phase will work too. Things really do have a way of always working out! Who knows, maybe I will even regain my career again at some point. The options are endless.
Friday, April 2, 2010
April 2nd- WORLD AUTISM AWARENESS DAY
Today is World Autism Awareness Day. In honor of my beautiful darlings who live with autism and work so hard to learn each day, we will be enjoying their spirit, spending the evening as a family and to steal a quote from one of my favorite books, "The Miracle Run," we are going to be "keeping it autistic!"
Have a wonderful day and wear blue in honor of the 1 in 91 children diagnosed with ASD.
Have a wonderful day and wear blue in honor of the 1 in 91 children diagnosed with ASD.
Thursday, April 1, 2010
What does autism awareness really mean?
April is Autism Awareness Month with the 2nd being World Autism Awareness Day. There is a lot of attention and advocacy for a great cause this time of year and I like to reflect on what this awareness means to me. In any given year I certainly spend more than a month being aware of autism that is for sure!
The prevalence of autism is staggering and there is always a new book, story or controversy related to the topic. All this "buzz" is good as it brings attention to autism spectrum disorders, which certainly deserves more research and effort regarding it's cause and cure. I definitely do not feel alone in our challenge to help our children live the best life possible. With so many children being diagnosed, I am blessed to have this connection with so many other parents and caregivers. It does make things easier, especially on those really tough days.
These days I prefer to read stories about families who have come into what I consider a new state of awareness. I define this as a place where acceptance and a fighting spirit are more balanced than things are in the beginning when you are searching for therapies and grieving autism. I love reading about families who have been working through autism for 15 or 20 years and are now watching their children move onto the next stages in life. I find solace in their patience and unconditional love. I will always be well read on all topics autism related, but as I have found a place of peace in this diagnosis, I would rather revel in the simple things my children learn and accomplish each day. I will always be an advocate for the autism community and April holds a special place in my heart. Autism awareness means different things for different people, but for us it encompasses what autism has brought to our lives, how we have changed and what we have to focus on for the future. After all, we will spend much more time with our children as adults and that time will sneak up on us unless we are paying attention.
The prevalence of autism is staggering and there is always a new book, story or controversy related to the topic. All this "buzz" is good as it brings attention to autism spectrum disorders, which certainly deserves more research and effort regarding it's cause and cure. I definitely do not feel alone in our challenge to help our children live the best life possible. With so many children being diagnosed, I am blessed to have this connection with so many other parents and caregivers. It does make things easier, especially on those really tough days.
These days I prefer to read stories about families who have come into what I consider a new state of awareness. I define this as a place where acceptance and a fighting spirit are more balanced than things are in the beginning when you are searching for therapies and grieving autism. I love reading about families who have been working through autism for 15 or 20 years and are now watching their children move onto the next stages in life. I find solace in their patience and unconditional love. I will always be well read on all topics autism related, but as I have found a place of peace in this diagnosis, I would rather revel in the simple things my children learn and accomplish each day. I will always be an advocate for the autism community and April holds a special place in my heart. Autism awareness means different things for different people, but for us it encompasses what autism has brought to our lives, how we have changed and what we have to focus on for the future. After all, we will spend much more time with our children as adults and that time will sneak up on us unless we are paying attention.
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