Siblings are people too.

i Oct 1st No Comments by

Last summer was great. My wife and I and our two daughters went to New York City for several days and saw a Broadway play. We went back home to Newport, played on the beach, and went for some great boat rides. We went to Seabreeze Amusement Park a few times, to the zoo, to the movies a lot, and ate ice cream constantly. Good times.

This summer stunk. We sold our house, registered the girls in a new school district, bought two smaller houses, packed up most of our things, and moved into two separate houses. No vacations, no trips, much less ice cream, no Seabreeze, no movies, no beach. The odd part is, it’s not a divorce, it’s a peacekeeping mission. The relationship between my two daughters has become too potentially dangerous for them to live in the same house any longer. And so they don’t.  We’ve been reminded by numerous doctors and professionals for years that we’ve been playing with fire by continuing to expose our younger daughter to her sister’s violent episodes. We’ve known that all along, of course, and my wife and I have talked for quite a while about the possibility of splitting the kids up. But there was a huge difference between talking about it and actually doing it. Taking that next step – transitioning from talking to doing – was paralyzing, heartbreaking, and gut-wrenchingly  difficult. I know that I could never have gotten to that point on my own – it took my wife’s initiative and courage to make it happen.

Regan is 11 and has significant special needs. She is amazingly high-functioning, incredible, and a true-to-life angel. But she is also volatile, intermittently aggressive, and unstoppable when she has an episode. Her younger sister, Grace (9), has been a target and an outlet for Regan since before Grace could walk. Regan has made Grace’s life very, very difficult, full of stress and fear and pain – emotional and physical. My wife and I initially watched Grace grow into a happy, outgoing, talkative, fun-loving child.  And we have more recently watched her grow into a depressed, withdrawn, nervous, angry, self-loathing young girl. The horse that she used to ride for hours every day with a huge smile eventually became just another source of sadness and emptiness and a symbol of her trying to escape from her sister. She still went to the stable each day but would spend more and more time alone behind the barn crying. And one day she just picked up her saddle and bridles, unpacked her locker, brought her equipment home, and cried for days.

Regan has benefitted from countless hours of therapy, special programs, special schools, hospitals, specialists, medication, and so many other resources. Everyone’s attention has always been on Regan, and nothing (nothing!) has been spared to ensure that she gets what she needs to help her grow, develop, cope, and work towards a life of independence and fulfillment. I thought we were doing that for Grace all along too, but now I know that she may not have seen it that way. I’m sure that for every ounce of anger, fear, embarrassment, and disgust she feels for her sister, she has an equal amount of resentment, jealousy, and confusion about why Regan has always had different rules, different expectations, and different consequences than she has. There is a lot of damage to undo before we can hope to move forward, before Grace learns to feel good enough about herself that she can come to terms with her sister and her situation and begin to truly understand the complex hand she has been dealt. Moving them into separate houses is just the start.

Many years ago we were warned that we would likely have to address serious concerns with Grace at some point, because the siblings of children with autism can suffer severe emotional difficulties due to the unusual dynamics in their families. Adding the physical implications of having Regan as a sister, along with its accompanying fear and anxiety, have made Grace even more fragile. We can’t fix Regan, but we know we have to do everything in our power to fix Grace , to make her realize that she is special, that she is incredible, that she is not what her sister makes her, but rather what she makes herself. And under no circumstances will we as parents allow her life and emotional state to crumble to pieces while she perceives that we do everything instead to help her disabled sister.

It is not just the child with the diagnosis that needs a parent’s help; siblings need your help just as much. Their emotional, physical, and mental wellbeing is every bit as precarious and at risk as is your child with autism. And it is every bit as important to see that it is nurtured. It is all too easy to believe that your typical child has things under control simply because she does not have a disability. Typical children can appear so much more “together” and in control of their lives simply by virtue of being compared to their socially and academically challenged siblings. It’s easy to get so caught up in trying to protect, guide, instruct, develop, encourage, and praise our children with disabilities that we may forget to protect, guide, instruct, develop, encourage, and praise our typical children just as much.  Or possibly even more so, because in all likelihood, they have developed the perception that they do not get as much positive attention as their disabled siblings, regardless of how proportionately it’s actually doled out. Fifty hugs and high-fives are wiped away by a single frustrated raised voice. I doubt that it’s much different among all-typical siblings, but the inherent foundation of insecurity that exists in most siblings of autistic children makes it a formidable beast to fight, and one that has to be addressed directly and early and continually.

And so, strange as it may sound, we live apart as a family in order to create some stability for our children. It’s certainly not what we ever expected, and I can’t begin to explain how difficult it is not to see my wife and one of my kids every day.  But we can see improvements in both girls already, and that encouragement makes it bearable. Every parent should have long ago given up the idea that their life is about themselves. We exist for our children now, and there is no better purpose.  As parents we should be willing to sell our souls and eat fish heads to make our children’s lives better. I don’t want to live apart from my family, and I don’t want my girls to live apart from each other. But I do know that this is the safest alternative left to us without putting Regan in residential care (and there is no way on the face of this earth that my wife and I would allow that to happen until there is absolutely no alternative). Grace is happy, laughing, and smiling again, and it is wonderful to see. She misses her mom, and she even misses her sister now that she isn’t forced to be around her and subjected to her routines and abuse. But she reverts back into the same angry, frightened girl when she is around Regan for more than a few isolated minutes. It will be a long time before they can safely live in the same house again, because it will be a long time before Grace is comfortable enough about herself that she will properly understand her sister’s disability.

Difficult as it is and will continue to be, my wife and I know we made the right decision. And Grace knows that we are doing as much to help her as we are doing to help her sister. Maybe it wasn’t such a bad summer after all.

Blending In

i Jun 8th 3 Comments by

Amy McMunn Schindler is a native West Virginian who has lived with her husband in Pittsford for the past 12 years.  She has earned degrees in both journalism and law and is a stay-at-home mom with the couple’s two sons, Trey, 11, and Will, 9.  You can read more of her work on her blog at www.fromthemomcave.blogspot.com and in the latest edition of Chicken Soup for the Soul: Raising Kids on the Spectrum.

“Blending In”

Last summer, I sat in a lawn chair at a picnic by a lake in my home state—a seven-hour drive away from where I now live.  There to celebrate the high school graduation of my older nephew, I watched him as I sat.

He was my sidekick, my special little buddy, long ago before I became a mother to autism.

After that, I learned that those seven-hour trips back to my childhood home became much more difficult with a child in crisis.  Our older son was born with classic autism.  Formally diagnosed at the age of two, he struggled to get through each day.  He struggled  to sleep.  He struggled to eat.  He was not soothed by our hugs.  He had no words.  He simply spent his day running.  Running from us.  Running from others.  Running out of our house and from stores,  running into streets and into parking lots.

We threw ourselves into a life of therapy in order to help him as life in my home state moved on without me.  My niece and nephews grew up without me beside them.  My children grew up away from their maternal grandparents, uncles and cousins.  Family members aged.  Some members died.  In the end, I know that I had to focus on our child; however, that understanding did not soothe the pain of being isolated from my family.

Therefore, the opportunity to leave our older son at home with Dad while I took our younger son to the graduation picnic was a welcome reprieve from the emergent pressure that came along with severe autism.  Yet, I was not carefree.  With our younger son as my traveling companion, I had the hope that we would simply “blend”.  Please, oh please, could we have the opportunity to relax, have a little fun and just blend in with the crowd?

Our younger son was just minutes old when he was placed on my chest and locked eyes with me.  Such a direct connection with my child shocked me.  In that moment, I realized both how seriously in trouble our older son was and how different his new little brother was going to be.

I thought Little Brother was going to be “normal”.

When did I realize that he was not?  Was it when his preschool classmates sat angelically at circle time while he rolled around the room?  Was it when he cried at loud noises?  Or, was it when he started talking ad nauseum about topics such as severe weather patterns, the Japanese railway system or the mating pattern of the prehistoric Megaladon shark?   Oh, I don’t know.   Today, I see them all as red flags that I missed because of the intensity of his brother’s autism.

He received his formal diagnosis roughly a year before the picnic at the age of seven, and in a matter of months, I found our happy-go-lucky, overly-chatty, younger son selectively mute, school phobic and so crippled with anxiety that he didn’t want to sleep alone or leave the house.

This was nothing like the autism we learned from his brother.

This child who appeared so “normal” was just as much in crisis as his older brother. It’s just that his crisis was buried deep inside.

He almost didn’t go on that trip to my home state.  He was so very anxious and scared.  But, the thought of fun with his cousins finally convinced him, and we set out on the open road.

I coached him along the way, “Buddy? You need to remember that people don’t like to be licked, okay?”

“Okay, Mama,” he replied.  But, I wasn’t sure my message resonated with him.

However, it did. He did not lick. What he did do was scratch, hiss and act like a rabid animal.  It was something he did in social situations. To him, crazy = cool.

He also kicked a cousin out of anger because he was unable to process his emotions.  Did that cousin even fully understand his issues? I wasn’t so sure.

After a while, none of the kids wanted him around.  From my lawn chair, there at the lake, I saw our son sitting off to himself at the end of the picnic table.  He looked confused and dejected.  He didn’t understand why nobody wanted to be with him.  My sweet boy.  He sat alone.

I realized then that the concept of my little family blending into general society would never happen no matter how hard I tried.  Emotion got the better of me.  A decade of failed efforts washed over me, and  I began to sob in defeat.  Every day, absolutely every day, I tried so hard just to get them through school or to go to the grocery store or to a movie or a birthday party. I just wanted to make it through to the end of an event like any other person. Why the heck did everything have to be so darned hard?

Desperately wanting to hide my tears, I bowed my head and put on my sunglasses, but I’m sure that I fooled no one. The fact was, autism held us firmly in its grasp. We were forever changed. We, my little family and I, were autism.

My son and I, we were strangers among family and friends at that picnic.  Our lives were very different. Trying to “blend” was trying to pretend that we were something we weren’t.  And, further still, by trying to blend, I wasn’t giving those around me the chance to rise to the occasion to help us.

That trip to my childhood home state was a disaster.  I left it in tears and cried most of the seven-hour drive back to where I now live.  So much for being the supportive aunt to my nephew. Yet I realized that it was my approach, although born from a natural desire, that was the flaw.

In the past year, I’ve blogged and written about this life of ours to all who will kindly read.  The desire to blend is no longer an option, and I’m actually happy about that. I’m realizing that the more the people around me learn about my diverse little family, the more they really do want to help us.

Ultimately, the goal is not for my family to blend to society, but for society to understand my family.

I have since returned to my home state with both of my children, and the increased awareness and acceptance of their needs have made my heart swell with emotion, but, more importantly, they have eased my children’s struggles tremendously.  It’s amazing what difference even the smallest of efforts can make.

Thank you, AutismUp for the work that you do to spread the word and to help our children. Thank you to my faithful readers who then care enough to listen to what I have to say so that you can carry the message back to your own communities. Truly, every little bit helps.

Importance of Volunteering and Making a Difference

i Jan 16th No Comments by

I started volunteering through UNYFEAT at the Lose the Training Wheels program, where I helped teach a girl with autism how to ride a two-wheel bike.  After five quick days, she was confidently riding a two-wheel bicycle by herself.  She gave me a card that said “You are my cool big sister” and her mother was in tears as she thanked me for helping her daughter ride a bike.  This made me realize that by volunteering for even an hour for five days over the summer, I could impact a child’s life, by teaching him or her how to ride a bike, or even just by talking to them about their favorite colors or summer trip and becoming a friend.

Last year, I also volunteered at the Exploring Sensations program at a gymnastic center, helping children with autism navigate through obstacle courses and encouraging them to try new activities, such as walking across a balance beam or jumping on a trampoline.  One of the boys I worked with came in the first day and was running around the room and had difficulty paying attention to what people were saying and on the activity that he was trying to complete.  When I would talk to him, his eyes looked everywhere, but at me.  By the end of the program, when I would say his name, he looked at me and when he walked in the room, he was much more focused.  Seeing his transformation throughout the program and knowing that I had a part in it made me feel amazing.  After each session, his mom would love to hear how her son did that day.  Even though I had only helped her son for one hour a week, she continuously thanked me and made me leave knowing that I had made a difference.

Throughout the school year, I volunteer at the Girl’s Group program with girls who have autism.  At each girl’s group session, the girls work on activities, such as coloring in pictures, making snacks, and playing Just Dance on the Wii.  While they are working on these activities, I encourage them, talk to them about the snack they are making, and talk to them about what they did over their winter break.  I have gotten to know many of the girls very well and I hope that they do not just think of me as a volunteer, but also as a friend.

It is so important for young people to volunteer with children who have disabilities.  These children have teachers, parents, and therapists, but some may have difficulties making friends or may only interact with the same few kids at school.  By volunteering with them, you can be their friend, make them feel special, and these children can make you feel special.  Also, volunteering teaches you to understand.  You might be at a restaurant enjoying you dinner, when a boy in the table next to you starts screaming or banging their hands on the table.  Instead of thinking that he is a misbehaved child and becoming annoyed, we should be patient and understand that the boy may have a disability.  I have learned so much from being a volunteer with UNYFEAT and would encourage anybody who has interest to contact UNYFEAT directly. (WWW.UNYFEAT.Org)

Raisa Masood

What is “Normal”?

i Nov 30th 1 Comment by

My wife and I lived in Princeton, NJ when our first child was born.  Princeton is a beautiful, historic, culturally- and academically-rich town, and perhaps it was this heritage that convinced us of all the great accomplishments that naturally awaited our daughter in the future.  Long before Samantha’s birth we were already excitedly planning the activities and successes that seemed to be the birthright of every child born to a professional couple in Princeton.  It didn’t take long for us to realize that none of those plans was likely to happen – proof once again that there is truly no sound louder than God laughing at our plans.
Samantha is the kindest, sweetest, most thoughtful girl in the world, and the entire universe was created long ago simply so that she could be here with us.  But since all things must be in balance, she is also aggressive, unpredictable, often violent, uncontrollable, irrational, and incredibly lonely.  Our other, younger daughter has essentially lost her own personality and now has become largely a by-product of her sister’s behavior — depressed, angry, completely lacking in confidence, sad, confused, paralyzingly anxious, bruised, and often scared to death.
We have arranged our entire lives around creating an environment in which Sam can feel comfortable, and which filters out as many of her triggers as possible.  It has become almost automatic – we are so used to operating this way that we rarely have to consciously think about some of it any longer.  In fact, some of our days now pass for what we consider “normal”.  But, as any family with a child with autism will tell you, our normal is nothing like what most other families take for granted.
Let’s face it, life in the suburbs is competitive, and it is not difficult to find parents willing to take assertive efforts to ensure that their children excel. As children get involved in more and more activities, the logistics required for getting each kid to and from their activities and practices are daunting.  From lacrosse practice to Taekwondo, to piano, to gymnastics, and then (maybe) home.  No doubt, it’s exhausting and challenging, and probably on some masochistic level, fulfilling.  And that’s normal – that’s what parents do, and that’s what families do. That’s normal. Just like going out to eat, visiting friends, having play dates, waiting in line at the grocery checkout, eating meals – regular normal stuff.
And I don’t have the slightest idea what that feels like.  That’s not my normal.
And with a few exceptions, those parents don’t have any idea what my normal feels like.  Every day when my younger daughter gets home from school, she runs into the house, changes her clothes, and within five minutes is sitting in my car waiting to be driven to the stable to ride and care for her horse.  That seems normal, right? But the reason we bought her a horse and drive her 15 miles each way every day is because she can no longer safely be in the house with her sister.  Not normal. (Fortunately, she loves horses more than anything in the world, and sister or no sister, there’s no place she’d rather be.  We lucked out bigtime on that one.)  Like many families with a member with autism, we balance on the head of a pin.  We are uptight, continually vigilant for danger signs, always preparing, always defending. Fortunately we don’t feel the need to explain any longer – adjusting your life to autism doesn’t translate to people who don’t live with it daily anyhow.  People are, after all, only able to put things into the context of their own lives, and fortunately, most of them don’t have to contend with anything like this.  They can go about things “normally”.
But like Teddy Roosevelt said long ago, comparison is the thief of joy.  I have no idea if I’m envious of the normalcy I see in other people’s lives because I don’t waste my time thinking about it.  We have our own kind of normal, and we’ve grown accustomed to it.   More often, I suppose, I wonder how any of them would handle the chaotic adventure that we face every day in literally everything we do.  And when Samantha is having an especially bad or aggressive day, we consider ourselves blessed that she is with us and not with someone less patient or less loving or less forgiving.  And somehow, through all the unpredictability, chaos, limitations, and wackiness, we manage to have a lot of fun, share a lot of love, and do some pretty wonderful things, probably even more than our rightful share.  I don’t know how anyone else feels about their “normal”, but I sure feel blessed with mine.

Dan Kerr

Nomination to Autism United – Charity Donation Nomination Committee

i Oct 27th No Comments by

Dear Autism United Charity Donation Nomination Committee,

It is with great pleasure and much pride that I nominate Upstate New York Families for Effective Autism Treatment (simply referred to as UNYFEAT) for your consideration as a recipient of a charitable contribution on your organization’s behalf.
UNYFEAT, founded in 2004 by a small group of autism parents who were in dire need of support themselves at a time when such did not exist in our local community, is the leading 501(c)3 autism advocacy organization in Rochester and its surrounding areas. Since then, UNYFEAT has grown to assist and embrace more than 1,000 family and professional member households, and continues to grow and develop just as the prevalence of growth in autism diagnoses does in our home town. Parents are the primary personnel and volunteers who operate the organization with the guidance of the Board of Directors, sharing one cause, one mission, and one voice.

The core mission of UNYFEAT is to support individuals with autism and their beloved families by enriching lives while providing greater opportunities to do so. By identifying areas of need for those affected by autism, creating and implementing social skills education programs, supporting caregivers, providing community education and promoting awareness, advocating for policy change, as well as collaborating with community partners to promote inclusion is the commitment UNYFEAT has made to and is privileged to promote among its membership.

UNYFEAT’s offerings consist of special interest groups as well as educational and recreational programming opportunities for its members. One of its finest is a collaborative effort with the Greater Rochester YMCA offering a summer social skills program for children with autism. UNYFEAT hires professionals who work with children that have autism and other developmental disabilities, in support of its campers alongside the YMCA staff. This camp program is available to all children between the ages of 3 and 16 and specialized instruction makes it possible for them to be fully included in all activities, of which they otherwise would not experience in a typical summer camp setting. Parents are asked to select a few simple goals for their child to work on during the program, such as successfully enter into an unfamiliar or uncomfortable environment, and are provided with a weekly progress report which maintains an objective centered focus in an effort to limit the common issue of summer regression that typically affects many students with autism. This platform also bridges the gap of need in our community for Extended School Year Services for those who do not necessarily regress, and have high academic abilities, but require social skills training and practice in such settings.

Another valued program offered annually is Lose The Training Wheels™. Their mission is to teach individuals with disabilities to ride a conventional two wheel bicycle and become life-long independent riders. This achievement, in turn, creates a gateway of opportunity, helping the riders gain assurance and self-reliance in many other aspects of their lives. Lose The Training Wheels™ provides specialized bicycle riding equipment, as well as a team of experts where each participant attends one 75 minute session per day for five consecutive days. UNYFEAT and its volunteers are able to change the lives of these children and teens by teaching them a skill that builds self-confidence, provides inclusion with their peers, and gives them a lifetime of fun and exercise.

In addition to the programs highlighted above, UNYFEAT also offers a Girl Power social group, teen bowling, swimming lessons, fitness and sensory based activities that many of its other members benefit from. Special interest groups are tailored to the passion of its young members who enjoy Legos, science, music, and electronics. During their time together, the children are supported in a social environment where they feel at ease to participate in being a part of a club of others who share their same interests while building friendships that carry on outside of the UNYFEAT walls.

UNYFEAT believes that supporting the caregiver is vital to the success of the individual, which is what drives the exceptional services it provides to families and professionals. The free Monthly Speaker Series offers topics related to supporting individuals with autism, such as the importance of writing solid IEP goals, and how to make the most of doctor appointments, of which are heavily attended and tremendously valued.

UNYFEAT also hosts professional conferences and workshops and has brought many well respected and admired autism experts such as Temple Grandin, Chantal Sicile-Kira, and most recently, Dr. Ross Greene, of which are open to the public. Parent Connection Groups, Sib Shops, and Family Gatherings are extremely important for UNYFEAT families. Its many parent groups consist of age specific concerns, such as the newly diagnosed and adult populations. Because the impact of autism on siblings can be an enormous weight for some to endure, UNYFEAT’s Sib Shops provide siblings ages 8-12 with the opportunity to make new friends while having fun and engaging in honest discussion about their lives.

UNYFEAT is a lifeline for its local autism community and continues to enhance its offerings as the need increases overall. Its present vision and long term goal is focused on the future of those living with autism, mainly the adult population. As the current young population advances toward transition, a life enrichment center, that would include program and classroom space as well as resource and recreation areas, becomes essential to their achievements and that that is why I believe UNYFEAT deserves to be an Autism United donation recipient for its contributions to the treasured community it so selflessly serves.

Thank you for your kind consideration,
Bethany M. Ciardi

Guest blog: “Laughing At Life’s Realities”

i Sep 14th No Comments by

My blog is called “Laughing at Life’s Realities.”

You can find it at: http://www.the-leader.com/blogs/laughing

Thanks,  Nicole Thibault

I’ve often said that when my son was diagnosed with Autism 5 years ago, I wished that the Doctors had an Autism User’s Manual for parents of the newly-diagnosed. Instead, we were given a diagnosis and a two-page pamphlet. It was not much to go on.

We really struggled in those first few weeks after the diagnosis. In addition to the blow to our hearts, we weren’t sure how to get the best help for our son; it was so overwhelming! Choosing agencies for therapies, different types of therapies, new doctors – our heads were spinning.

At one point, someone suggested I look into an Autism Support Group. I remembered a link to the local group here in Rochester on some of the paperwork we got from a Doctor, and I signed onto the Yahoo message board for UNYFEAT, Upstate New York Families for Effective Autism Treatment.

One of the benefits from being a member of a support group was that I had a community of families that had already been through many of the experiences I was going through for the first time. If I needed to know the name of a Dentist that is sensitive to kids with Special Needs, all I had to do was put up a post on the Message Boards, or search through the History of messages to find a Dentist name and location.

Knowing that I didn’t have to “reinvent the wheel” was a comfort, as well as knowing that other parents had been through this before and had advice to offer. I can’t even express the gratitude I feel to the parents who have replied to my requests for information; these parents made the path ahead a little easier to travel.

I remember a posting on the Message Board for a meet-up of some parents at a local playground. Knowing my son needed more socialization with other children, I brought my two boys to meet other children with Autism and their families. It was there I started some of the friendships I still carry in my heart today.

Some people I know through UNYFEAT are in name only; I recognize their names from the Message Boards. Their advice and responses have provided great insight and suggestions along our journey through Autism.

Other UNYFEAT members I have become friends with on FaceBook, and we share articles, blogs, and events in the area on our pages. We support each other daily through our postings.

And some people I’ve met through UNYFEAT are life-long friends. Our kids meet regularly for play dates, we get invitations to birthday parties, and we’ve even vacationed with another family in Orlando, meeting up at the pool and theme parks for days of fun with our kids.

I meet with other parents in parking lots to discuss teachers and services. We help each other out with child care when another needs a break.  We text and call when something is not going the way we’d hoped, and we celebrate successes together.

And through our connections with UNYFEAT, my son, Tristan, has found his best friend, which means the world to me. He’s accepted and valued as just a GREAT KID by his best friend and his family. And we feel the same about his friend too.

I find such solace in these friendships I’ve made through UNYFEAT. Parent-to-Parent support has been so meaningful to our family and we’ve made some friendships that will last a lifetime. I can’t imagine where we’d be if we would’ve had to travel this road alone, but luckily, I don’t have to imagine it. We had support all along the way.

Wonderful Research Opportunities at Rochester’s Autism Treatment Network located at The University of Rochester

i Jun 14th No Comments by

On Saturday, June 9th, I had the extraordinary experience of being able to attend “The ATN Conference” at The University of Rochester. Having participated in the numerous walks in our area by Autism Speaks, and seeing the advertisements for the Conference, I was interested in knowing how the money was utilized. I knew that there were 17 Autism Treatment Network (ATN) sites across the US (15) and Canada (2), but I’d only vaguely heard about the research being done at our local site.

Knowing we were fortunate to have this site, I decided it was a worthwhile endeavor and secured child care in order to attend.

I was pleasantly surprised to hear a series of short, easy to understand presentations by a series of presenters representing many different research projects currently going on at the ATN. Each presentation lasted about 20 minutes with insightful information regarding (in order of presentation) Sleep Disorders, ATN Toolkits and Dissemination Projects, Children’s Hyperactivity, Communication & Music Perception Study, Diet and Nutrition in Children with Autism Spectrum Disorder, Taste and Smell in Autism: Uncovering the Pathways from Sensory Functioning to Food Preferences, and lastly, Genetics of Autism.

One of the most eye opening pieces of information shared (by Dr. Tristram Smith), was in regards to the families who participate in research studies. According to Dr. Smith, “Nearly 90 percent of children with cancer are enrolled in clinical trials – contrasted with only 5 percent of children with autism.”…

I could easily go into much detail about why it is difficult for families to commit to these clinical trials, but I think I’d rather instead, focus on why we as families need to do a better job of seeking answers.

At the conference it was noted by Lynn Cole that research is making a move from seeking causes of autism to seeking strategies that are effective in managing autism. I think that is a rallying cry for our families to step up and participate in these clinical trials. I know that when we are at the CSE tables that the research being done through the ATN will be invaluable in negotiating for services for our children in educational domains.

It is critical for us to improve that 5 percent participation rate in these studies. Yes, it is one more task in our overloaded lives, but the information gleamed is something that will pave the way for so many other families, and we all want that road to be smoother that the one we’ve traveled ourselves.

With that in mind, UNYFEAT has rallied to the cry to help with sharing more information about “our” ATN. UNYFEAT will be sharing more through our message board, Facebook, and eventually link the information to our Website through its own drop down feature. In the meantime, please visit: http://www.autismspeaks.org/science/participate-in-research or call directly to our ATN at (585) 275-0953.

Special thanks for Dr. Susan Hyman for her organization of the Conference and to the presenters, Dr. Heidi Connolly, Lynn Cole (MS, PNP), Dr. Tristram Smith, Dr. Laura Silverman, Dr. Patricia Stewart, Dr. Loisa Bennetto, and Dr. Chris Stodgell for giving of their time on Saturday to represent the work done in their studies. On behalf of UNYFEAT we are very grateful for the work done by your teams.

Ann Cole
Community Relations Director
Upstate NY Families for Effective Autism Treatment

Autism: Better Diagnosis Perhaps, Now How About Programming?

i Apr 3rd 3 Comments by

Last week new figures were released from The Center for Disease Control, (CDC) citing new autism diagnosis rates of one in every 88 children.  This is a 78% increase since the first report in 2007. It is disturbing to see articles citing better detection as the reason for the surge in autism.   That’s nearly 1 million U.S. children and teens believed to be given a medical diagnosis of autism.  Perhaps we are doing a better job of detecting, but we are doing a lousy job of supporting these individuals. 

The rippling effect of supporting the population is crippling, and sadly, families facing the challenges will cite the lack of appropriate support available from a 6-8 month wait to receive a diagnosis, (critically lost time in early intervention) through the public school system struggles to support the population, accessing medical, dental and recreational options, right through transitioning to adulthood, many of which remain at home without support.  This is happening to 1 out of every 88 kids, but at least we’re doing a better job at detection?  I think we better do more!

What can be done?  Locally, there are programs being developed to support social skills, recreation, and special interests.  Summer programs such as “Lose The Training Wheels” to teach bike riding, and “Social Skill Education Programs”, allowing inclusive camp opportunities do exist.  They are proven effective, but can be costly.   Year-long special interest groups such as Science Club, Electronic Kids Club, Girl Power, Exploring Sensations, Sibshops, Lego Buddies, and Music Makers are giving families some options for programs where otherwise there would be none.  UNYFEAT has provided some scholarship opportunities.  Support groups called “Connections” help parents learn strategies to navigate intricate and confusing special education and Medicaid systems, again which some of the brightest have been denied access.    All of these programs I’ve mentioned are being provided through charitable donations and some hard won grants, and all of those funds once spent, need to be replenished or the programs cease.  Future goals will include options for young adults and vocational planning, but not without funding.

Initially begun by 4 moms seeking more information in a coffee shop, UNYFEAT.Org now supports nearly 1000 local families, and provides training and conferences to hundreds more including educators, other support organizations, emergency first responders and the community at large.  April, Autism Awareness Month is a perfect time to support UNYFEAT initiatives.  Make a donation today.  Visit WWW.UNYFEAT.Org for ways to give, including support of the annual event to be held April 27th, Seeds of Hope, Growing and Giving Gala.  Providing support for those on the spectrum cannot be done alone, and with incidence continuing to rise, your help was never needed more.  

Ann Cole

Community Relations Director

Upstate NY Families for Effective Autism Treatment (UNYFEAT)

A Training That Hits a Nerve and Creates a Shift in Leadership

i Nov 16th No Comments by

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 The Process That Leads Directly to the Product

i Jun 3rd 1 Comment by

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