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Posts tagged ‘Parenting’

Autism Moms: Things to Remember

With Mother’s Day 2016 just around the corner, I’ve been thinking a lot about my own mother and how much I appreciate her and everything she does for me. I wouldn’t be where I am today if weren’t for her, so thank you so much; I love you! Today I want to talk about some things that “autism moms” may experience or should know about. I’ve compiled this list from various sources, including the internet, my own mom, and the moms of some of my friends from the Learning Academy last year. I included a few entries that apply for high functioning autism, and some for low functioning, so as to not discriminate against either demographic. Some of these things may seem obvious, but honestly speaking, being a parent to kid(s) on the spectrum is a challenging thing, and sometimes being reminded of these things can be a huge help in keeping us grounded. So here’s my list of the most important things you will experience as an autism mom:

  1. You will become very flexible. Kids with autism can often be unpredictable and don’t always have the same thought process as neurotypical children, so you will have to learn to adapt to their behavior. Don’t expect a “one size fits all” parenting style to work very well.
  2. At the end of the day, you will have the patience of a saint. For a while, your child will test your sanity, but you will come out stronger for it in the end. My mom used to be quicker to anger, now she can take anything that comes at her.
  3. No matter where your child falls on the spectrum, you will come to be thankful for progress of any kind, be it vocal, academic or social, so much more than the average parent. You may even feel happier than they do!
  4. Like it or not, you will learn basically all there is to know about autism itself. The moms I talked to formulating this list seemed to know more about autism than some neuroscientists, which I found humorous.
  5. This one is very important: please make sure you take care of yourself occasionally. You won’t be able to take care of your kids if you’re too fatigued to do anything. Treat yourself to a night out every now and then.
  6. You may or may not go crazy at times thinking about your child’s future. Just kidding… you will absolutely go crazy! All parents worry about this, but when you have the unpredictability autism brings like I mentioned before, it can really dominate your mind at times.
  7. Above all else, you will truly learn to appreciate what you have. Kids with autism are just as wonderful as those without it, and if you just have the determination, you can make them become a success through a loving relationship.

Make sure to show your appreciation this Mother’s Day, and to all the wonderful moms out there, thank you for all you do!

gage and mom

My mother and I

  • G. Sosso

Autism & Parenting: A Personal Tale

For many families with autism, the name Temple Grandin is well known. While Dr. Grandin is truly inspiring and a beacon of hope, for me the hero in that family goes by the same nickname as me and many of you, Mom… Eustacia Cutler.  I can’t imagine facing the challenges and decisions she made at a time when she did not have support of her community and services such as CARD like we have now.

I just want to note that if you are reading this, and you are a Mom (or a Dad taking on the role of Mom), you are doing an incredible job! One thing that Eustacia did not have to contend with is the undue pressure of social media to contend with setting an unrealistic standard of motherhood. It is human nature to only want to share the positive aspects of your life, but in doing so a much altered reality is portrayed. It is in the sharing our own struggles and asking for help that we can help each other and then truly celebrate the successes, however small.

Let me share with you a recent episode of my life that, at the time, I thought was definitely a mom failure on my part. I’ve gotten quite spoiled as of late with minimal meltdowns for the past couple of years by my ten year old. I can’t quite say that about myself, but of her I can.  Of course she would correct me and say, “Uh Mom, you mean disasters”. So this particular disaster was triggered by me forgetting a cardinal parenting rule.  Don’t commit to something you don’t deliver. The day before my daughter had asked me if we could stop somewhere on the way to school and get a breakfast sandwich (and a donut) instead of her eating at home or school as is the norm. I said, yes, and added quickly as long as you are ready early. However, I did not expound on that or provide a definition of what ready and early was.  She got up very early that day, but about five minutes before I intended to leave I checked on her and she was still in her PJs!!! It seems getting up early only provided her a chance to get distracted and lose track of time. With my reminder she jumped into action but at this point I knew we wouldn’t be able to stop and I made her breakfast.

We got in the car and I gave her the breakfast to eat on the way. She ate it without complaint and was singing along with the radio. Then we got to her school. She asked why we were there. I said, so you could go to school. She asked about stopping. I explained she wasn’t ready so we weren’t able to stop today. This is normally where in my spoiled state she would take it in stride and the day would keep going. But this time….it stopped. We pulled up to the car rider line where the safety patrol was and she wasn’t budging. So I pulled up further where the ESE teachers and Aides were and she was in tears and repeating, “I am not ready; I was supposed to go to the store”. They tried; I was out of the parked car at this point trying all my tricks. It wasn’t working. I was trying very hard to stay calm as I had to present to about a hundred people an hour later. I thanked the two teachers that stayed out there with me for the twenty minutes and told them I would drive around to the front office. There was a part of me that thought if you had just taken her and been late you could have avoided this. But I was not giving in. I drove to the front of the school, tried one more distraction reset, “Should we park on the right or the left?” in an animated voice.  “Insistence” was in the backseat still wanting her original plan.

We parked. I think she realized at that point I wasn’t giving in and so she got out of the car, rushed through the office and headed up to her classroom. I followed behind with her backpack, getting a classroom pass, etc.  I caught up with her at the top of the stairs. She told her teacher, “I am having a rough morning”, and I passed the torch. It was reported back to me that she ended up recovering well and having a great day. The next morning, she was ready to go 15 minutes before we were scheduled to leave without prompting from me. Maybe it wasn’t a failure after all?

I have long since given up the “I can do it on my own” pretense. I often call up my fellow parents, CARD consultants, family and friends when facing a new twist and turn.

  • Michele Jewell, CARD Constituency Board Chair

Notes from the Universe (A Love Letter)

“A sense of having been forgotten by ‘normal’ life is common when we are going through difficult times, as if we are trapped in a parallel universe where broken people live.”  

                                                         – Sharon Salzberg, Love Your Enemies, 2013

Dear world,

When my daughter was diagnosed with autism twenty one years ago, there was an overwhelming perception that our family had been snatched out of the only universe we assumed existed, and dropped into a parallel reality from which we could see friends, family members and colleagues continuing along in a brightly lit time-space continuum to which we no longer belonged. Our new universe moved slowly, was a little darker, and the force field between the two realities seemed impenetrable. It often felt as if people in the other world had the power to reach out and pull us back in, but they chose not to.

The assumed sense that one could move about and participate freely in the community was replaced with a list of all the places no longer among our destinations – day care centers, libraries, concert venues, movie theaters, churches, music lessons, art classes, dance class, junior sports leagues. Some of this had to do with being told my child was not welcome, and some had to do with her inability to participate, sit quietly, pay attention, or perhaps my unwillingness to endure the stares and comments of well-meaning people who thought I simply had no control over a three-year old child.

We were desperate to find a way to “fix” her so we could rejoin life in our former reality. In our new life, her existence felt mostly tolerated, her experiences dramatically restricted, and her future certainly seemed bleak. The burden rested squarely on her family and specialists to get her back on track.

No longer envisioning her first day of school, her prom, graduation, college and marriage, I was instead learning about mysterious agencies and services that only existed in this strange new world. We became polyglots in many new languages – funding silo-ese, intervention jargon, doctor speak, ESE-ish and person-first-disability-advocacy talk. Our speech became unintelligible to our former compatriots. Those who stuck with us did so because they understood the language of the heart, which presents no barriers to communication.

Agencies, systems, services, organizations all blended together in a maddening soup. Which phone number leads to clinical services, which leads to funding information, or which leads to parent training? I’m sure I called some places two or three times. I can’t remember how many times I heard, “But that’s not what we do.” It took quite a while to understand, from the organizations’ points of view, that their missions, funding and service mandates were precisely defined by their administrative, funding source, or legislative overseers, and it wasn’t the person on the phone’s fault that he or she could not fix my child, starting tomorrow morning.

After countless phone calls, workshops, conferences and meetings, I finally assembled a map of this new universe.

My daughter worked her way through her new world effortlessly. Those around her scrambled daily to figure out how to smooth her path so that she would never know she was not part of the brightly lit, happy little world from which we had been summarily dismissed.

Through luck or grace, she managed to draw to her side the best of the best in all of the specialized professions. She miraculously found her way across the force field into some beautifully lit rooms from that other place, and from there, managed to draw even more wonderful people around her.

One of the greatest, most profound changes that took place in my own worldview came from one of the organizations I called early on, but set aside because they “didn’t do that” when I asked about direct interventions. This was the Center for Autism & Related Disabilities (CARD) at USF.

By chance, I ran into a CARD staff member at a workshop I was attending about 18 months after my initial contact with the organization. The staff member asked how things were going, and I said, “Okay….” She sensed the implied “but”, and thus began an enduring collaboration and friendship. Over the course of several home visits, quite a few community meetings, and many phone calls, I learned from the CARD consultant that my child was intelligent, funny, had tremendous ability to learn new skills, and most of all, that she was not “broken.” I began relating to my own child in a very different way.

My conversations with teachers and other providers changed from a desperate tone of “somebody has to fix my broken child” to “how can we work together to help each other give my child the supports she needs to participate more fully in the community?” Her school worked collaboratively with CARD and others from the university to learn more about positive behavior support, which at the time was a fairly new concept. Together, we created visual schedules, choice cards and other tools to help reduce challenging behaviors and increase her ability to understand and communicate with others at school and at home.

I began to see CARD in a different light, in terms of its long-term value in the community. Eventually, I became employed at CARD, working in the resource office. The hard-working consultants and other staff members are some of the many silent heroes of our time. Their work is not always something that makes a big splashy difference overnight (though sometimes it does – remember the Not-Too-Haunted Hallways event?). However, a steady, faithful commitment to the core values of community capacity-building, inclusion and quality of life does make a difference over the long haul. It changes how people view our children and adults with disabilities such as ASD. It changes how libraries, zoos, museums and hotels perceive our families. It changes how welcome students are in regular education classrooms. It changes how employers think about the people they might want to hire when filling positions, or how they relate to employees facing challenges of raising children with ASD and other disabilities.

Children being diagnosed with ASD today are coming into a very different world. There are many more options and supports, and it is becoming more possible for families not to feel as if they have been booted out of their own lives into an alternate, far less desirable reality.

Autism has become a word almost everyone has heard — a diagnosis attached to someone related to, or known to, almost every person you meet on the street. Places in the community that did not seem to welcome our children now approach CARD to ask how they can become “autism friendly”. More students with disabilities, including ASD, are being included in regular education classes, after-school programs and junior sports leagues. More programs are being designed to help young adults with ASD successfully attend college or become employed in competitive, meaningful jobs. More and more, people are thinking about long-term, big-picture changes we can make to help our children and adults with ASDs live fully included, meaningful and fulfilling lives as part of the community.

Without a sound or much fanfare, the illusion of a sad, dark, separate but parallel universe is melting away to reveal to everyone that individuals with disabilities never were “broken”, or truly “other”. We all belong to the one and only universe. Our children, too, have gifts to offer and challenges to overcome.

This is a two-way realization. In fact, it seems that people in that brightly lit, smoothly-moving “other” universe always did want to reach out, but until recently, did not know how.  Increased outreach and awareness have shown there is help, and where to find it.

So – to the unsung heroes of CARD and the many other organizations working every day to raise awareness, build capacity, and fundamentally change the (one) world in which we live – thank you!

Sincerely,

Jean MacNeill

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