Those who know me would describe me as a "lifelong learner". I love to learn. I learn informally through everyday life experiences and I also learn formally by attending trainings and conferences.
I had many learning and networking opportunities on my personal and professional agenda for 2018. Unfortunately, I will not be able to attend some of them due to my current health condition, but I wanted to let you know about these upcoming conferences. The ones listed below will be held either in Hershey, PA or in State College, PA. Let me know if you plan to attend any of them and please share with me what you learn.
January 8, 2018 - Pennsylvania Inclusive Higher Education Consortium's Symposium 2018 – The Journey of Inclusion: Experiencing the College Years. An interactive day of learning, reflection, initiative and application with international leaders, innovators and award – winning authors: John O’Brien, Bruce Uditsky and Cate Weir. Please register at -https://PIHEC.regfox.com/symposium-2018-the-journey-of-inclusion-experiencing-the-college-years (If you register for the Everyday Lives Conference, you can attend this Symposium for free!) - Hershey Lodge, Hershey.
January 9-11, 2018 - Everyday Lives Conference. Eric Carter, PhD & Al Condeluci, PhD will be speaking at this conference - Hershey Lodge, Hershey.
February 26-28, 2018 - Pennsylvania Department of Education – Bureau of Special Education Annual Conference – Making a Difference: Educational Practices That Work! . Dr Rosemarie Allen will be one of the Keynote Speakers at this conference. Limited parents/caregivers scholarships available - Hershey Convention Center, Hershey.
March 22, 2018 - Family Coaching Implementer’s Conference - Nittany Lion Inn, State College.
April 30, 2018 - May 3, 2018 - 20th Children’s Interagency Conference, “We Are Better Together - Penn Stater Conference Center, State College.
May 22 - 23, 2018 - 2018 Pennsylvania Positive Behavior Support (PAPBS) Network Implementers’ Forum – Hershey Lodge and Convention Center, Hershey
July 25, 2018 – July 27, 2018 - 2018 PA Community on Transition Conference - Pathways to Success: Transitioning into Tomorrow Together, The Penn Stater Conference Center, State College.
August 6–9, 2018 - National Autism Conference. Limited parents/caregivers scholarships available- The Penn Stater Conference Center, State College.
I hope we all continue to learn, grow, and inspire change in our communities.
Thank you for taking care of me!
I know that I don’t have to write a blog post each week, but this is a goal I set for myself. It keeps my brain and fine motors working. Writing has been so therapeutic to me, I get to work on so many therapy/recovery goals in one exercise. Hence, I will do my best to write a few sentences each week.
I’ve been home for five days now. I already had one trip to the Emergency Room, that was scary. Thank God, I’m back home. Home Health services are going well. I was looking forward to being home but being home has also been very overwhelming.
However, it’s a joy to see how much my children have grown during this time. On Monday, I watched my middle child get yogurt and cereal from the kitchen, serve himself, sit at the table to eat, then clean up the table. He also returned the yogurt and cereal to where he got them from and washed his bowl. He did all that before getting his shoes and coat on for school. He will be 6 years old in a month and completing all those tasks took lot of effort and planning. He had to overcome many organizational, fine motor and sensory challenges, but he did it! I was so proud of him.
This past weekend, my 11-year-old daughter, the oldest, asked to mop the kitchen floor. I kept telling her not to worry about it, but she found many reasons to do it and assured me she would be safe. She sure did! She moped the kitchen and the upstairs bathroom and has been cleaning many other things around the house.
Last night, the youngest of our family (he will be four years old in a few days), applied lotion on my very dry legs. He loves that texture, so he had fun doing it but when he was done, he said to me, “does that make you feel better?” I had tears. I thought I was giving him something fun to do but he was more concerned about taking care of me.
In their unique ways, my children have been taking good care of me. I’m a blessed Mama, I have great kids. I also have awesome friends who shower me with love and take care of my children and me during this time. Thank you all for your prayers, visits, cards, calls, texts, emails, messages, gifts, meals, and encouragement. You make me brave and I thank God for each one of you!
21 Days After The Stroke
Science says it takes 21 days to learn a new habit or forgo an old one. Well, it’s been 21 days since I had my stroke and I’ve seen lot of improvements. It’s amazing how many tricks my brain had to re-learn in these 21 days. Lot of new pathways have been created in my brain and my synapses and neurons have been hard at work. I realize that everyone’s recovery from any brain injury is different and I do not take lightly the challenges that we all face. As I share a glimpse of my progress in this blog post, please be advised that it’s just that, a glimpse of reality. I still have many things to work through and some things might never get better. However, many things did get better and here’s some of what has happened in the past three weeks.
The facial nerves that were affected by the stroke are the ones close to my nose and my mouth. I somehow now have an “extraordinary” nose and tongue. I smell things I didn’t smell before - sometimes smelling my own food is too overwhelming. I remember eating something that was not spicy and feeling like my tongue was on fire. Two weeks later, I’m craving more spicy food, go figure! My taste buds are just as confused as the rest of my body.
My blood sugar has stabilized and I’m finally off the finger pricks. I also had difficulty chewing and swallowing, especially on the left side, the side that was affected by the stroke. That has greatly improved as well.
My blood pressure has also stabilized, but now that I had a stroke, I will be taking baby aspirin for the rest of my life. I started other new medications as well while at the rehabilitation hospital and most of my symptoms seem to be under control. Quite a few specialists have been added to my follow-up treatment team and I’ll have to get used to that.
I can organize my thoughts and answer questions or explain things, but the more thinking involved, the harder it is for me to produce the words on demands. For example, I can tell a story or relate something that happened earlier in the day with no problem at all. However, when presented with an issue that requires problem solving, I need more time to process the situation, think about solution, pick a course of action, then share that with others. The more thought process involved, the more time I needed.
I have also been very sensitive to sound and light. I get easily stimulated, which triggers my headaches. I’m glad to report that I have been making accommodations for myself and slowly learning to cope with stimuli.
The Good News: I will be leaving the rehabilitation hospital on December 15!
I will continue with my physical and occupational therapies once I get home.
The next big goal I’m working on is getting back to work and driving again.
Until next time, remember that you can teach an old brain some new tricks…so learn something new today!
Self-Advocate & Ally to the differently ABLE
Founder of Grace & Hope Consulting, LLC
I CAN afford to BE disABLED!
T’was the day before Thanksgiving…Perhaps a day to prepare for all the festivities: Making the last trip to the grocery store, cleaning the house for guests, planning recreational activities for the long weekend…But I was preparing for something totally different.
I had a scheduled surgery that morning. I ran a few errands in preparation for the surgery, drove back home to park my car since I wouldn’t be able to drive after the procedure. I then requested an Uber ride to the hospital.
All the people I talked to who either had this surgery or knew someone who had it, had wonderful things to say about the procedure… “You’ll be so glad you had it …You won’t have to deal with all this pain anymore… You’ll feel like a new person”. I looked forward to the procedure. It promised a new beginning. A new beginning, I had. Just not exactly the one I expected.
My scheduled procedure went well, just as expected. Once in the recovery room, I started complaining of excruciating headaches that felt very different than my regular migraines. I was taken to the observation room and given pain medication, but the headache persisted.
Then a couple hours after the procedure, I was eating a Popsicle and tried to tell a family member that my head was feeling weird, but no words were coming out. My lips were moving but no words were coming out. I could see the worried look on everyone’s faces and knew something was wrong. Within a few minutes, my room was full of people. I suppose they all came to help. Rapid response was called.
By the time the medical staff were in the room, the symptoms had progressed. I couldn’t answer questions like “who’s the president of the United States?” I knew the answer but couldn’t get the words out. I couldn’t move the left side of my body. The left side of my face was numb. My left eye was drooping. I was presenting all the typical signs of a stroke.
I was then rushed to a different hospital by helicopter. The initial plan was to remove the blood clot as soon as possible; we all assumed that I had a blood clot from the surgery. Once in the new hospital, the CT scan and MRI could not find any blood clot, yet I still had all the stroke symptoms. I was put on stroke protocol and treated as such.
I was in that hospital for a week, three days were spent in the Intensive Care Unit. My entire body was out of order during that time. I had developed medical problems I didn’t have before. My entire being had changed, internally and externally.
While the changes were debilitating, I was not ashamed of them, but I slowly became aware of other people’s discomfort with my “new disabilities”. One person who had known me my entire life said, “you can’t afford to be a disabled woman with three kids” and by that comment I was reminded of society’s view of disability.
Ten years ago, I was legally declared “disabled” due to debilitating medical conditions. Those conditions were however invisible and apparently did not bother anyone. I have worked since, I have been a mom, a business owner, and so many other things while living with the same challenging conditions.
Somehow, as long as they were invisible, nobody cared. There were my problems, not society’s. I spent some days in bed, some days I had to call for help, other days I canceled work assignments and prior commitments. Somehow, nobody ever told me I couldn’t afford to be a “disabled woman with three kids”.
This time my disability is visible, and it seems to bother people more than it bothers me. I’m in a wheelchair. I’m having difficulty communicating. I can’t take care of my personal care needs. It’s obvious that I’m not “independent” according to society’s standards.
Does society view people with visible disability as a burden? Now that they can see my limitations, is it a constant reminder to them of their lack of support? Perhaps my invisible disabilities made me look “normal” for ten years and now all the sudden I’m no longer “normal”? Sadly, the answer to all these questions is a loud “YES” and I have read many research papers on this topic during my post-graduate studies, but I will not bore you with that.
If my visible disabilities do not bother me, does that mean that I will not apply myself to regain the functions I’ve lost? Not at all! I’m doing physical, occupational, speech, and vision therapies and I have already seen major improvements. What I’m trying to say is that I do not fear limitations. Even if I do not regain all the functional abilities I had before the stroke, I believe and KNOW that with support and accommodations, I can still have a meaningful life. Maybe my life will be even more meaningful than it’s ever been because I now have a deeper sense of gratitude, appreciation, and empathy.
I will not apologize for having disabilities, visible or invisible. I’m a beautiful human being inside and out. What you see or do not see does not define who I truly am. Get to know me and other people that society calls “disabled”, then you will realize that we are all able and disabled in our unique ways. Every human being has both strengths and weaknesses.
Now, look at the title of this article again, but only read the words in capital letters. You should read I CAN BE ABLED. Yes, people can be "abled" by the respect they receive from society and that respect starts by assuming that they can have meaningful lives.
If we assume that people can have meaningful lives, regardless of their functional limitations, then we start supporting people in achieving lives of purpose, and therefore, there will be no room for statements like “you can’t afford to be a disabled woman with three children”. In fact, I will joyfully be a "disabled" mother of three "disabled" children because our family has embraced disability as part of our human experience. It’s time the rest of society gets with the program!
Self-Advocate & Ally to the differently ABLE
Founder of Grace & Hope Consulting, LLC
P.S. Hallegra is my middle name. It comes from the Italian “allegria”, which translates into “allegresse” in French or “glee” in English. Therefore, Hallegra means lively joy or gaiety, which I want to identify with even more in this season of my life.