n. pl. re·spon·si·bil·i·ties
1. The state, quality, or fact of being responsible.
1. The obligation to carry forward an assigned task to a successful conclusion. With responsibility goes authority to direct and take the necessary action to ensure success.
I recently had the privilege of attending an intense leadership training that not only gave me skills to put into use in my professional life but gave me the tools to make great strides in my personal life which crosses over to my relationship with my children, my husband, my siblings, my parents, friends… so on and so forth.
I have always been a leader for as long as I can remember. Being the oldest of 7 siblings, leadership came with the position of first born, oldest daughter. It was my responsibility to take care of others, inherited at birth. I have always thought of taking care of others as being responsible FOR them. During an intense life changing training that spanned Thursday night, Friday night all day/evening on Saturday and the majority of Sunday I realized that responsibility was not something you did FOR others but actually something that you give TO others. The shifting began and I started to see that if I wanted others to do for themselves, I needed to pull back and allow this to happen.
Being the parent of two sons who have a developmental disability of autism, I had not thought of this before. My leadership, I realized through this process, was fear based leadership. Fear of school services being taken away, fear of dying, fear of my sons being abused, and fear of my boys being vulnerable in a world that may not be ready for them fully…. The fear goes on and on. When I live in fear I continue to be responsible FOR my sons therefore not giving them the skills to advocate effectively for themselves.
This is where disclosure and honestly with myself needed to be looked at. If I am going to die, wouldn’t it make sense to teach my sons what they need in order to be successful in all areas of life from school, home, community…? Absolutely!!!! When I started to make the shift from being responsible for others to being responsible to others I changed. I started to shift away from negative feelings such as: protector, rescuer, controller, not fully listening to others, being tired, anxious, even blaming others or being in victim mode. I began to feel more positive and take back my power. I began to teach my children, to encourage, to share. I also started to be in a state of relaxation, a feeling of being free, of more awareness of others around me and what I call “speaking my truth” as well as hearing what others have to say. Because of this shift, I listen, I collaborate freely without conditions or strings and I began to trust in the process fully again and open the doors to new experiences and opportunities.
The 4 day intensive training blew the doors wide open to allow for awareness, a shift/awareness that had already begun in me during my son Billy’s 6th grade year. The program he would transition to for middle school was more on a life skills track with academics embedded but with more community based instruction than I would have liked. After all, aren’t “typical students” getting all of their instruction during the day in classrooms? So why does my son have to go on a day trip to Wegmans or do community service at an ice cream parlor??? Oh boy was I mad – angry that things had to be different than what my typical daughter’s 6th grade experience had been. I was angry that I had to be feeling this way and put in this position to begin with. Oh how the resentment and anger had built up around this new placement and journey. Where did I lose my trust? Where and when did my sense of adventure and “wait and see” attitude leave me along the way? In my pre-Autism days I would have definitely taken more risks and wouldn’t have fear of the unknown fog my lenses. Now all I could see was the work I would have to do to prove my side, or the work I would have to do to clean up the aftermath of a failed year. I couldn’t afford to lose a year, after all, Billy only has so many years left in his educational career and we can’t afford to have one wasted year in the mix.
Yikes! I never even thought to ask Billy what he wanted or to even look to see if he was happy in this new placement. Why would I? I wasn’t happy so why would Billy be! My gut said, wait a minute. My personal philosophy is, question placement, question the schools philosophy and follow my gut that I am still in charge of community based instruction. My fear, need for control and rescue kicked in and I called everyone I could find a number for. I did my work and visited the new program, asked endless questions and still didn’t like their philosophy. I then started to talk and rally my troops to help me justify my cause and my reasons as to why the 6th grade program would not fit Billy. What I got back was trust in the process from the educators. “We are making changes and we hear your concerns but at this time we feel this program will be able to appropriately meet Billy’s needs.” So I did what I had to do and I cautiously stepped back and allowed the program to do its thing.
Well to my surprise, but keeping a speculative eye on things, Billy’s first month in the new program was amazing. He loved it and was embedded in science. Who wouldn’t be when you get to watch caterpillars do their life cycle thing right under your eyes? They were even videotaping the caterpillars just in case they hatched while they were out of the classroom. Billy couldn’t stop talking about them and what they were doing each day. The Smart Board was also a huge plus and the many computers available to the students throughout the day. They still used a multisensory approach to learning and programs for reading and math, but they just did things a bit differently than when in 5th grade. That year Billy would make many gains in science and have a passion for this area whether it was volcanoes, butterflies, or body systems, he was learning and loving it. He was also making some gains in independence because of less 1:1 time. He was making new friends and some academic gains although not spectacular, but still he made gains. As for community based instruction (CBI), Billy loves his outings/fieldtrips and getting a break from the classroom demands. I love hearing about his adventures and looking at pictures.
This was my learning year, the year my shift started, and when I decided I needed to allow Billy to think more for himself, allowing the process to happen without my always needing to be in control and give trust back to an educational system that hasn’t always done right by me or my children. I do my best these days to take it day by day and not look for a crisis or a hill to die on. There will be times that I have to shift back into full gear and advocate to help my son but while doing so I will remain responsible to him rather than for him. “Nothing about Billy without Billy” is a motto that I have always had throughout the years. Now instead of just knowing who Billy is and what is good for him, I talk with him about what he wants, what he likes, and where he wants to be. I include him more everyday in the decision process and continue to exploit his strengths and interests. The shift has also begun for Billy. Although he still needs assistance in many areas, he is being as independent as he can be and I am pulling more and more away to allow him to spread his wings. For now, someone is usually around to catch him when he falls. We all have natural support whether we have a disability or not, and we all are able to make meaningful mistakes that teach us. It is Billy’s time to experience and be a students and a 13 year old in the truest meaning of the word. I trust him to be responsible for himself and his actions. I trust and I let go. This is being responsible in its truest form.
Billy is beginning to understand his Autism and the complexity it comes with. He is starting to ask questions about his future and is showing an interest in being more independent. A couple years ago I may have discouraged him from wanting to learn how to stay home alone. Now I respond with, “I like that idea. Let’s see how we can help you to be able to do that, Billy. Maybe you can answer the phone when someone calls because if you want to stay home alone you will need to be able to use the phone (functionally). How about you call dad at work…. Tell me about the stove Billy? Are you allowed to touch the stove when mom isn’t in the kitchen with you? Let’s cook dinner together so I can show you how to use the stove safely…” Although Billy isn’t ready to stay home alone he is working on improving his independence and taking an active role in developing his own skills. Billy knows he has Autism. It is the work we do to teach him about what that means and the supports that will help him be successful that really counts. Being responsible to my children means talking and disclosing both the strengths that make them successful as well as the challenges and the supports that will help them be successful so they can have meaningful participation and relationships in all aspects of their lives.
Let’s face it the only one I would be protecting if I hadn’t shifted or disclosed would have been myself.
All of us are leaders. People are drawn to us for various reasons whether we encourage it, accept or not. What I ask is which one are you? A fear based leader or a love based leader? I have been both and I will say leading in love is by far the better choice.
For more information on Upstate New York Families for Effective Autism visit www.unyfeat.org
For the intensive 4 day training from Lifestream that changed my life and had impact on my children visit http://www.lifestreamrochester.com/
Julie Buick mother and advocate to Kathleen, Billy and Bobby
Educational Advocate/Trainer and UNYFEAT’s – VP of Advocacy
“Shifting responsibility for our children to responsibility to our children creates a lifelong expectation in ourselves and our child that educates, honors, challenges, respects, and values both individuals. It is exactly what I expect from those who enter into my life and my childs.” Julie Buick
It Is The Process That Leads Directly To The Product
When I was doing Early Childhood in my past life my motto and words I lived by were, “It is the Process not the Product that counts”.
As a parent and professional in the Special Education field, what I often hear is “I don’t understand the process” and “I am exhausted from the process and all the work I am doing on behalf of my child”. These words have been said so often these days over the phone, at workshops and from friend to friend. If you weren’t tired I’d have to question whether you were in the process or just expecting the product to happen. The Product I am referring to is Positive Adult Outcomes or Meaningful Progress from year to year which is the intent of the all children’s school career with a disability or without. In order to get this positive outcome or product you have to know the process and work through the process. You have to have a sense of having the end in mind. When I refer to The Process this is our ability to gain knowledge and understanding of General Education requirements, 504 Plans, Special Education – Individualized Education Plans and the laws and intent that govern.
I’d be lying if I said raising a child with a disability of any kind is easy. For that matter raising a child is never easy. It takes work, patience, love, support, belief, trust, family, friends, community, schools, money, knowledge of resources and on and on and on.
All of these listed here are not only about your child, they are about yourself and those who work with and on behalf of your children. The system brings both good and bad and each day is a testament of a parent’s resilience. My resilience is sometimes over flowing one day and completely diminished another. I get back up on those bad days and dust myself off and continue on because without the process I wouldn’t have a direction or a way to push for appropriate supports for my children.
On the outside, I like many I know look all put together saying the right things, knowing many of the answers, helping one another to understand the process and challenging us all to push harder, expect more and do so with grace. On the inside many of us are always questioning the decisions we’ve made in the past and today. Was it the right choice? Should I have stayed in this placement? Why didn’t I ask that question? Maybe I should have tried this…. We are human; we are a parent so we have emotions, doubt, quilt, grief… just as all humans do.
Making mistakes and learning from them is part of the process. I have always referred to the mistakes I have made along the way and there have been many as “Learning Experiences”. Mistakes are what we learn from and build upon. I for one usually never make the same mistake twice. We can’t go back. It isn’t healthy to be stuck on the past or what could have been or what went wrong or what injustice has been done. We have to pick ourselves up, dust off and keep moving forward. When we move forward we continue to work with the process and challenge the process to do better.
When we get stuck often times we feel as thou we have been a target of some corruption or hidden agenda. Perhaps we truly don’t yet understand the process in which we are immersed. We need to reflect on why we didn’t get what we asked for on behalf of our child. Is it truly a need? Did we have the right information to prove our request? Do we need to request additional evaluations to prove the service is needed? Is it an unreasonable request? Do I fully understand my child’s disability? Is it the schools responsibility to provide that or mine as the parent? Do I want it or does my child really need it? What could I have negotiated on instead of not getting anything I felt was appropriate for my child? Do I, the parent, need to attend a workshop or training to help me understand the process better? Do I need to talk to a friend or a professional? Reflection can show us a different way and allow us to see where our mistakes are as well as what we need to do to make it better.
When we blame and target schools and professionals and get stuck, we do more harm than good. When we are blamed or our child is blamed by schools and professionals we get defensive. I often work with families where this is occurring. My advice is to put it back on the needs of the child. Help professionals to understand it isn’t a bad kid they are looking at but rather it is due to the disability. What they are seeing is a need; the child is trying to tell us something. Education of a child’s disability and how it impacts them and their school day is essential to providing appropriate supports and services. We must as parents remember not to get stuck on what the school did to us or how they treated us which can easily become the “it’s us against them mentality”. Rather, how are we going to make it better, move past, and build a collaborative relationship back up? It is always about the child and we need to also help schools and professionals to also understand it is not about them but, it is about the child – our child!
I don’t have a magic wand that will explain and teach the process and how to navigate it. Reaching out to UNYFEAT by attending the Speaker Series, Connections Parent Support Group meetings, accessing and asking questions on the Yahoo Message Board, attending monthly meet-ups and recreations activities will all enable you to meet and talk with other parents who are also navigating the process and together you will be able to educate and learn from one another. Another resource in our community is The Advocacy Center which offers free support to families to help understand the process. These offerings include but are not limited to workshops, Lay Advocacy, Partners in Policy Making, newsletter, Ask the Advocate open forums, phone assistance… You can learn more about what both offer by visiting www.unyfeat.org and www.advocacycenter.com
Remember it is the process that directly leads to the positive adult outcomes of your children. Joined together with a common goal we help many!
I wish you the best in the process,
Julie Buick, Parent and Advocate to Billy, Bobby and Kathleen
UNYFEAT’s Vice President of Advocacy
Staying true to myself and finding balance in 2011 has brought me to a weekly Yoga class on Monday afternoons. I am finding I am a quick study in the art of Yoga and finding my inner peace and balance. If only my inner peace and balance would stay with me on through the week till Friday. I’m still working on that one.
My Yoga instructor recently challenged my class to Live with Intent.
I asked myself during that class how was I living with intent and was my intent or purpose truly where I wanted my journey to take me. Living with intent can have multiple meanings at different times. I am speaking of intent in the form of living with purpose. Do we truly live with purpose and intent or are we merely going through the motions of life, waiting for others to make the change we want to see in the world.
I continued to ponder this challenge well into the next week, asking myself all the ways I lived with true and deep intent and purpose. How I am creating change in the world? How am I engaging my energy and passions? Where are my greatest accomplishments that are seen and heard? What are my goals and better yet, what journey am I pursuing and am I fully on board with it?
Living with intent doesn’t come easy. It comes with pushing your own boundaries and testing your strength, endurance and comfort level. It comes with many lessons along the way which include successes and failure. These I like to call “Learning Experiences.” In order to live with intent, you must first embrace that you can make a difference in your own life and others. You must agree to live out loud and be heard. You must set goals for yourself and hold yourself accountable, even when you are far from reaching them.
Can you imagine yourself making a difference in the life of your own child? Of course you can and you are! Can you make a difference in the life of another? Absolutely!
I can honestly say that I live with intent. My intent and purpose is to open doors for children and adults with disabilities. To raise the bar higher in our community and expect acceptance, understanding, and compassionate accommodations for those that need them. To help teachers, students, community members, legislators, business owners, media, families, neighbors…. Embrace our families who have a loved one with a disability such as an Autism Spectrum Disorder.
I’m no longer fearful of speaking up and outward. For taking the time to help someone in need of my assistance and compassion. I’ve increased my comfort level to live out loud and challenge others to make a difference. I wouldn’t ask you if I wasn’t willing to walk the walk and talk the talk myself. It didn’t occur overnight, but little by little, with support from my family, friends and community I have been able to reach my goals and live with intent in an important aspect of my life.
I also realize I can not wait for others to live with intent. Sometimes we have to be asked or challenged in order to see where change is needed. Sometimes we need others to see our true potential and offer support and a helping hand in that direction.
So today I challenge you to live with intent.
I live with intent and purpose to help uphold UNYFEAT’s mission and help create change in our community on behalf of all child and adults who have an Autism Spectrum Disorder. I live with intent and purpose to create a safe, loving and accepting community for my children when I am gone. I live with intent and purpose and continue to push the bar higher in classrooms, in regards to the capacity of educators, business owners, legislators, bus drivers, community members, students, parents… UNYFEAT needs your support, our community needs your support, your children need your support and I need your support. Together we can make the difference in the lives of others and create a place we are all truly committed to one another and honored to call community. Julie Buick
risk more than others think is safe,
care more than others think is wise,
dream more than others think is practical,
expect more than others think is possible.
On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.
A few weeks ago I had the honor of presenting at a “caring for the caregiver” conference. A subject that hits a sore note for many caregivers. Finding time for ourselves is often a fleeting thought while reality hits in. How can we take time for ourselves when our kids, our husbands, our extended family, our jobs and the house all need our immediate attention and care? Guilt is what prevents us for taking a much needed break or doing something special for ourselves. Guilt that is seen as us being selfish or self centered if we go to the gym, get our nails done or take an art class. Yet it is essential to relieve stress, keep healthy and be able to keep up with life demands.
I have found that many caregivers wait for permission before taking care of themselves. Sometimes at the recommendation of a doctor as a way to decrease stress or illness. Or waiting to give themselves permission saying when the kids all go to school full time I will take a year off and concentrate on myself, or when things settle down at school, or when the kids get older. Waiting for the right time to take time for yourself often results in there never really being a right time. We only find another life challenge or excuse that prevents us from doing so. Is it guilt? Is it fear? Is it how our mothers taught us to be?
I love a new show on HBO called the Big C which is the story of a woman who find out she has stage 4 melanoma cancer. She opts to not do treatment and begins to live out loud, takes chances and has a presence that says it is all about me. Yet she is really about finding balance for herself and those she loves. What I find from watching this show is I want to be her. I want to live today, take chances and do things that make me happy and healthy. Why wait till I get permission to live by a doctor telling me live but it will be a short life. This show makes me want to be a better person to myself so that I can be a better person to those who are in my life and depend on me.
I am learning that if I am to be so much too so many I have to take time to live for me. So that being said I have been promising myself that I would take an art class. I have always been creative and enjoyed drawing and painting but only dabbling. I have been too afraid to take a chance on myself and flop. Or maybe feeling guilty about spending money and time on me and something that only I will get pleasure from. I took the dive 3 weeks ago and took a 4 hour art class. It has been one of the best investments in myself to date. Since then I have gotten a new zest for life and find myself seeing a talented artist who is living out loud through paint. My daughter even is amazed at how I can take paint and in an afternoon create beautiful works of art.
One of the activities I and the conference attendees did was to create a bucket list. Not one that you will do when you find out you have only a few months to live. Rather a bucket list to live out loud and begin to take care of yourself today. We each wrote down 12 things we would like to achieve for 2011. Keeping in mind that each month we would be working on one of the items. Some of the items that were shared were working on a special needs trust, paying off credit card bills, taking classes, make a monthly date night with spouse/significant other, getting more insurance, exercise more, drink more water, go on vacation with and without children… Some were a way to decrease the day to day stress that would lead to being more healthy and others were about doing something that just made them feel good. Taking an art class was one of the items on my bucket list. One that I am thrilled to say I have completed and continue to enjoy.
So for the 2011 year I give you permission take time for yourself. I challenge you to make a bucket list that you will commit to doing this year. If you feel like living out loud let us know what your journey will look like. I am looking forward to this year with a renewed energy for life, taking time for myself so that I can be here for those who need and love me. How about you?
Care Givers Bill of Rights – By: Julie Buick
A Care Giver has the right…
Community. When I hear the word community, UNYFEAT automatically comes to mind. After my children were diagnosed, community took on a new definition. No longer did we just automatically belong or naturally “fit in”. Our family had to earn our invitation to family gatherings that weren’t Autism-friendly. We were glared at and talked about in public, often to our face or within earshot. Recreation and community outings weren’t in our vocabulary. School? Well, school, they just didn’t have the expertise yet to create meaningful community that accepts and understands my children’s individuality.
A lot has changed since the diagnosis, and with those changes came UNYFEAT.
Meaningful community comes natural to UNYFEAT. We are surrounded by parents who get the trials and tribulations we are faced with not only daily but for most, hourly. Everyday brings a new hurdle, that without UNYFEAT, I just don’t know if I would have the energy to jump it.
Our journeys all brought us to UNYFEAT for one reason or another. I believe we were brought here to continue to create a community of acceptance, that with time, will flow over into other communities creating a place where our children and families will automatically be welcomed and accepted. Businesses, schools, specialty programs that will meet us where we are and set up environments that are truly inclusive.
UNYFEAT is dedicated to building a community where everyone belongs. Of course, it is one person, one business, one teacher at a time. With the continued support of our families, board members and volunteers, and their dedication to the mission of UNYFEAT, we can continue to make huge strides. UNYFEAT begins with “U”. We need “U” more than ever to become involved.
Julie Buick, VP of Advocacy