Show Yourself Some Love : The Importance of Self-Care for Caregivers

Those who followed my blog in the past may have noticed a lot less activity in recent years. In the fall of 2014 my son Jeremy moved out of the family home and into supported living, and found an art studio where he could paint. It has been a wonderful journey helping Jeremy create the life he dreamed of. In 2016 he had his first curated art show (which was a huge success) followed by more shows.

Then, in January 2017 I suffered a concussion when my car was hit by a truck. I spent all of  2017 following my medical team’s advice. At first it meant no activity and no screen time, followed by  various therapies, more rest and restricted screen time. Now, over a year later, I am not yet 100% recovered, but I am driving again, and I am finally able to write and speak professionally once again – although at a slower pace.

One of the results of my car accident was that I was forced to do nothing but take care of myself on a daily basis.  As a parent of a wonderful young person – Jeremy- who requires 24 hour supports, I had in the past ‘stolen’ the time to re-boot and decompress – parents with their children still at home will get this – 10 mins here, 20 mins there,  “date night”  when respite was available. As well, my mind was rarely still – I loved writing and speaking and volunteering to help others – I was always actively solving challenges and creating solutions in my head. That’s how Jeremy ended up having the skills to communicate, and discovering his gift of painting: because  I never gave up on him even if others did and I found solutions to many of his challenges. I remember getting up very early before dawn to work on a book, then going for a run or walk outside before my husband left to go to work and before I got the kids up and off to school. I always practiced some self-care that I enjoyed – I loved getting up early and seeing the night become day – I’m definitely a morning person. But I also knew that if I didn’t do it early in the day while everyone was asleep – I met not get another chance. I never knew what the day would bring.

The car accident forced me to  only take care of myself and let others take care of me as well. Meditations, connecting more with my intuition and spiritual self, massages to help my body heal, and all the necessary therapies (including physical, vestibular, vision, speech) to create new connections really made me focus on ME. And you know what? The world did not fall apart – Jeremy had a very, very  rough time for the first two months, and so did I. But we survived.

Meditation has been a daily habit for me for some time, except for about the first six months after my concussion when I could not focus. the When Jeremy was in his early twenties and  still living at home he started to have more anxiety (on top of the PTSD from past traumatic experiences). It’s a known fact that many teens and young adults on the spectrum have high levels of anxiety. At that time, I realized that Jeremy also had great visualization skills,  so I thought why not have him try meditation? He doesn’t necessarily always sit calmly to listen, but he is still able to meditate.

The first meditations he ever enjoyed were some Deepak & Oprah 21 Day Meditation Experiences.  After taking part in free meditation challenges with intriguing titles such as  Perfect Health Meditations; Finding Your Flow Meditation Challenge, Jeremy would tell me which ones he wanted to listen to again and we would buy them so he could access them at any time.

There has been an interesting side effect to Jeremy’s daily meditation habit. Jeremy is very susceptible to the energy level of whichever  Team Member is supporting him that day. If the person is feeling anxious or stressed, Jeremy feels it.  While Jeremy is meditating, the Team Member who is  listening to the meditation with him usually benefits as well:  Jeremy feels them becoming more relaxed and calm as well. Everyone benefits!

Although I loved the Deepak and Oprah meditation series, I had never visited the Chopra Center. I knew it was somewhere in my area and realized people flew in from all over to take part in retreats and consult with the Mind – Body Medical Group. But it wasn’t until very recently that I learned that there were opportunities for those living close by to go to their take yoga and meditation classes, and to enjoy different Ayurvedic massage treatments.

My message to you today is: make self-care a priority.  Take care of yourself; no-one else will. Show yourself some love. Find what you can do on a regular basis  to keep your body and  mind healthy and your connection to Spirit / God alive. You’ll be happier, healthier and grateful you did.

Autism & modern love

Jeremy Sicile-Kira

Here is an article I wrote five years ago  – Jeremy was 20 years old. (It first appeared in  Spectrum Magazine). I’m reprinting it here now because it is still as relevant today as it was back then. Enjoy!

Jeremy is quite a catch – he’s buff from working out at the gym, has an endearing personality, and he starred in an award-winning episode of the MTV ‘True Life’ series. Never mind that he is autistic, needs help with everyday living skills, and probably always will. (In my opinion, he should be looking for a traditional wife who will take care of him, instead of a girlfriend, but I digress.)

One night recently I woke up at 3:00 am to find that all the houselights had been turned on. Usually a sound sleeper, Jeremy had been making the rounds. I heard him downstairs and decided to investigate. He was looking through my husband’s collection of architecture books. He found the one he was looking for, Las Vegas: The Fabulous 50s, and flipped it open to the section on strip clubs and showgirls. “Why are you up, Jeremy, what’s going on?” I asked. “I’m thinking about girls,” he replied.

Oh, how I miss the prepubescent years when Jeremy was examining the guitars in the music magazines and not the beautiful models holding them. Although Jeremy has been showing an interest in females for some time, he is now communicating that guitar magazines just don’t do it for him anymore. I long for the days when his choice of reading and viewing materials ran along the gamut of Dr. Seuss’s ABC and Sesame Street when he wasn’t occupied with his school work.

The show that finally got his attention away from Big Bird is Entourage, a HBO series which is a show about four good friends from Queens, N.Y., now living in Los Angeles who try to get laid and avoid relationships in-between acting gigs. There is a lot of eye candy for the guys on here (and the male actors are not so bad-looking either). Dusty, one of Jeremy’s tutors, offered us the DVD of the first season as a gift. Jeremy got hooked. When asked what he liked about it, Jeremy spelled out by pointing to letters on his letterboard, “I like that they are good friends.” So I bought him Friends, which I thought was a little tamer but still dealt with friendships, but after watching two episodes, Jeremy didn’t want to see anymore. Frankly, there isn’t enough female nudity to keep his interest. I guess it wasn’t the male bonding between the main characters on Entourage that he was focusing on.

My main concerns for Jeremy up until now have been: where will he live, what can he do to earn money, what will happen when my husband and I are no longer alive? Not a week goes by when I don’t research the possibilities and create new possible scenarios in my mind. He is now 20 years old, the same age as the young adults I worked with in a state institution for the developmentally disabled years before Jeremy was born (I guess you can catch autism by osmosis). It is one thing to help people with autism and their families with the emotional detachment of a professional; it is quite another to be caring for and planning for your own child. At the end of the day, it is the parents who are responsible, and it is difficult emotionally as well as practically to try and create a future for your loved one. For most parents of autistic kids, just providing the basic necessities of food, shelter and work for them is a constant worry. But loving caresses, physical intimacy, love, and a relationship with someone who is with you because they choose to be (not because they are related to you) are also basic necessities. I am not immune to the sadness embedded in the emails from parents of young adults writing to me for advice, asking for answers, asking me what they should do. How are they going to cope? I feel their pain. My heart aches as it mirrors my own distress. We have barely enough energy to make it through an autism-filled day, let alone plan for the tangible—and less tangible—future needs of our children.

My son learned to communicate by spelling out on a letter board and has been doing it now for about four years. The way he describes what autism is like for him, it sounds like a less severe form of “locked-in syndrome,” similar to what Jean Dominique Bauby, the editor-in-chief of Elle suffered. Bauby had a stroke and lapsed into a coma and when he woke up he could move only his left eye. He wrote his memoir, The Diving Bell and the Butterfly, blinking out a code representing the letters of the alphabet presented to him on a letterboard.

Jeremy is clear about what he feels and thinks. “Being severely autistic means being stuck in a body that doesn’t work well with no way to communicate. People ask: Do I feel emotions? Yes I do, I just can’t show them. Like when my mom helps me I am really grateful, but I can’t get my face to move. You know autism is very different from being retarded and the difference is that nothing seems different to me. I am the same as you inside. I can’t control my body but I am smart.”

Before my son could communicate his feelings, I had no idea how he felt about people and relationships. To look at his body language, which he can’t really control, you would think he does not want to be around people. Yet, he wants to connect so badly with people his own age and he struggles to find ways to communicate this. His quest to connect with friends was effectively documented on MTV: Jeremy masters assistive technology in order to have a voice, yet has difficulty staying in a room full of noisy people at his own party.

On his 19th birthday, Jeremy let me know for the first time that he was unhappy with his birthday presents. When I asked him why, he spelled, “I want a cell phone.” “What do you want with a cell phone? You are nonverbal,” I exclaimed. “I want to text my friends,” he spelled. He sees how adept his younger sister, Rebecca, is at connecting with her friends via text, and he was hoping to do the same. This cell phone business has been difficult. Those little keyboards are not easy considering the visual processing and motor problems my son has. And the only real friends he has (sadly) are his tutors. But I know he is lonely and wants to connect. So he got a cell phone.

Since Jeremy keeps bringing up girls, I suggested he join Facebook and work on his communication skills, as this is important for any kind of relationship. “Do you think I will really find a girlfriend on Facebook?” he asked. “It’s not that simple, but you will meet people and you can connect with others right from home and practice communicating,” I told him. Now, he goes on Facebook about every other day with one of his tutors. He likes to see if he has any friend requests and to comment on what he is doing. What are you doing right now? Jeremy is thinking the girls at the gym are hot.

Mark, one of his tutors, suggested that Jeremy start working out. He took Jeremy to check out different gyms. Once they had narrowed down their search, Jeremy and I went to discuss membership terms. When it came time to ask questions, mine were the usual, “What is the initial membership fee? What will the monthly payments come to?” I asked. Jeremy’s questions at the first place were a bit different. “Are the girls nice here?” he spelled out. “Are they pretty?”

As we arrived at the second place, LA Fitness, the doors flew open and more than a dozen gorgeous, shapely young women came running out. Jeremy was all smiles. We walked in and the receptionist said, “You’ve just missed the Charger Girls!” Jeremy was even happier. The Charger Girls are the cheerleaders for the San Diego Chargers football team. A Charger Girls poster is the only athletic memorabilia hanging in Jeremy’s room. “I like this place! This is where I want to come workout,” he said. Jeremy got straight to the point with the salesman. “Do the Charger Girls really work out here? Are they good at sports? What is their schedule?”

Jeremy joined LA Fitness, and goes there regularly with either Mark or Troy, another tutor. This past Christmas, Jeremy spelled out, “I want to buy a calendar with pictures of girls for Troy.” “Uhhh…okay, ask Janine,” I replied. Jeremy is, after all, over 18. Sure enough, Jeremy went to the mall with Janine (another tutor) and came back with a calendar aptly titled “Hot Buns.” I’ll leave the rest to your imagination. I’m sure he was inspired by the Charger Girls.

When Troy came over the following Wednesday as usual to take Jeremy to the gym, Jeremy gave him the calendar. Now, Troy is an ex-Navy guy, single dad of an 8-year-old girl, and works in a middle school classroom for students with aggressive behaviors. He is not your shy, withdrawn type. However, he looked perplexed when Jeremy handed him the calendar. “Jeremy, thank you, and I’m honored you thought of me, but why are you giving me this calendar?” Jeremy rocked excitedly back and forth and spelled out, “Because you are the best tutor to help my mom understand she needs to find me a girlfriend.” “Jeremy, I know you need a girlfriend, the question is how to find one,” I said. “Troy is the best tutor to help,” insisted Jeremy.

I asked Jeremy what he wants in a girlfriend. “When I think about having a girlfriend I am thinking about sex,” he explained. I asked, “Is sex all you think about?” “That really is not the main thing. I want a relationship. I want to have someone to talk to and laugh with,” he replied.

We have discussed a lot about what it means to have friendships and relationships and the meaning of love and how that is different from just having sex. He is beginning to understand the complexity and difficulty of it. Even without autism, having a loving intimate relationship with another person is not a given. “I think finding love is not easy for anyone. What I mean is that most people greatly search for love but do not find true love. I know this because I frankly see that my aunt is not married and she is a great person.”
I ask him, “What does love mean for you?” “Love for me means that someone likes my way of thinking about life and the same philosophy about living. Love is not a prisoner but it makes you realize that you care about this person more than anyone else.”

I could not have said it better myself.

While Jeremy has his eye on Entourage for inspiration, I have my sights set on another HBO show, Big Love. Having three wives, a three-house suburban home, an extended family and strong community ties – it sounds like a better model for what Jeremy’s future should look like. With three wives, Jeremy would have the love and intimacy he craves, and the women would have plenty of respite. This arrangement would also solve the housing problem and our worries about what will happen when his father and I are no longer alive. For now, I keep searching for ways for him to connect and relate with people, and to keep alive the flame of hope he carries in his heart that one day, he will find true love.

Transition Planning: At Times Funny, But Always Real

I cherish this flower

I cherish this flower

Recently I was invited to speak in Sarnia, Canada – which is across the border from Detroit.  The conference organized by the Jumpstart Lambton Kent Teen Transition committee was entitled “Clarity, Please!” and was about the transition to adulthood.  They launched a new website  which has lots of relevant information and will make it easier for families and teens with special needs to  find the help they need. As well, there is a partnership with Ability Online, a free monitored, supportive, online community for kids, teens and young adults of all abilities.

I love presenting at different conferences around the planet as it gives me the opportunity to hear the experiences of different families, organizations, and the young adults who are on a mission to create the life they dream of.  I presented on Autism Life Skills  and A Full Life with Autism – information that is valid for any person with a developmental disability.  At “Clarity Please!” There was a panel of young adults and their families who talked about their transition to adulthood and how that was going. Although all the stories were different, there were some traits that all the families shared. These were:

  • the parents were strong advocates
  • they raised their children to have good self esteem
  • they made connections in the community
  • they partnered with helpful agencies
  • the young adults had learned to be advocates for themselves
  • they encouraged their  young adult to work towards creating the life they dreamed of, even if it was different from what the parents had imagined for their adult child.
Karen Holland and David Schaller of Pathways Health Centre

Karen Holland and David Schaller of Pathways Health Centre

At each conference there are always some touching and funny moments. My most embarrassing moment at the conference was when I mistook  the mayor of Sarnia and a member of parliament (who were sitting at the presenter’s table with me) as upcoming members on the family panel. I thought it was funny when   Dave Schaller, Manager of Family and Community Services at Pathways Health Centre for Children recapped the day saying my talk was “at times funny but always real.” That’s how I feel about trying to access services for my son, Jeremy!

The most touching moment for me was at the end of the day.  A father walked over and gave me a flower –  fashioned from pipe cleaners that had been placed on each table along with other fidget items. “Here,” he said “My son made this for you.”  Instances like this make the traveling to share information all worthwhile.

Community Connections : Life’s a Beach

Jeremy putting the cones out

Jeremy has always loved the beach. Since moving to San Diego when the kids were little, the ocean has played an important part in our lives. Recently, Jeremy had some time free up on his schedule and wanted a way to give back to our local community that involved his love of the ocean. Beach clean-up days seemed like an obvious first choice, but those days were sporadic and by the time we heard about them, it was too late to change plans we had already made.

Then, I ran into the head lifeguard that we had gotten to know over the years. As a mom on the beach when Jeremy and Rebecca were little, I would park our stuff in front of the lifeguard tower. Jeremy was enthusiastic about swimming and I was not always sure that I or a helper could always keep him close to shore. As a child on the autism spectrum, safety was not one of his strong points.

The head lifeguard mentioned how he saw Jeremy out walking the beach a few times a week (with another adult). I asked if there was anything Jeremy could to help the lifeguards as Jeremy was looking for ways to give back. When he replied, “Well, I don’t know much about Jeremy, what can he do?,” I replied “I don’t know much about the lifeguard station, what do you need?” The Head lifeguard gave me his business card and told me to call him so we could discuss the possibility further.

We met up and talked and the head lifeguard said they needed help setting up for the day and cleaning the safety patrol pick-up trucks. It was decided that Jeremy would start one morning a week. Jeremy was thrilled. He loves helping and interacting with the lifeguard, Johnnie, who works there. Then Jeremy gets to go for his walk on the beach, and finally get some fries at the restaurant on the beach where he is already a known regular.

Jeremy washing the patrol truck

Not only is Jeremy giving back and interacting with some more people, he is also having to learn new  motor skills. As you can well imagine, he is more motivated to wash the safety patrol pickup, than he is to wash the family car.

Giving back by volunteering in a treasured environment, or at a task a person likes to do is a great way to create connections.  And community connections are an important part of every day life.

Jeremy diggin a hole with some assistance

People Creating Options: The Julie + Michael Tracy Family Foundation and Urban Autism Solutions

Be the change that you wish to see in the world – Mahatma Gandhi

Here at Autism College  we enjoy highlighting   people that  are working towards creating opportunities for those with autism. Here is a guest blog written by Michael Tracy, co-founder of the Julie + Michael Tracy Family Foundation (JMTF) and Urban Autism Solutions.  JMTF and Urban Solutions  exists to help address challenges  in regards to employment and housing that our young adults with autism face.

Julie and Michael Tracy

Julie and Michael Tracy

Julie and I are the parents of two sons, Joseph, 23, and John, 21. While Joe developed typically, John was diagnosed with Pervasive Developmental Disorder (Autism) in preschool. We tried hard to mainstream him, but John struggled socially. No amount of soccer or Boy Scouts or 4H seemed to help. It tore out hearts out to see him so isolated. In middle school, John developed schizoaffective disorder. By the time he reached his sophomore year in high school he had been hospitalized at least three times and we could see that a big change was needed.

In his sophomore year in high school, John was enrolled in the Sonia Shankman Orthogenic School, a residential, therapeutic school associated with the University of Chicago. In the spring of 2011 he had his most serious psychotic break and was hospitalized for five weeks at Rush Hospital on the Near West Side of Chicago. It was a pretty intense experience for John and our family. While Julie and I were very impressed with the care John was given at Rush, we learned of the need for more specific psychiatric and transitional care directed towards young adults with autism and comorbid mental health problems.

After John was released and back at the “O” School, we founded the Julie + Michael Tracy Family Foundation and Urban Autism Solutions to help address challenges facing young adults with autism. Learning that the vast majority of this population lives at home with their parents and often don’t hold jobs and/or have meaningful lives outside the home, we set out to work with Rush University Medical Center to establish the Autism Assessment Research and Treatment Service Center (AARTS) with the goal of working with young adults on the Spectrum to achieve better outcomes.

Urban Autism Solutions is currently the only organization dedicated to providing wrap around solutions and a path to a fully integrated community life. We plan to create a series of residences for young adults with autism on the near West Side of Chicago. We just purchased our first residence that will house three young adults with autism. The building is in close proximity to Rush, allowing easy access to the Rush AARTS Center. With public transportation, the city is a much more livable place for those like John who will probably never drive. The neighborhood is conducive to walking, as is close not only to Rush but also to the University of Illinois at Chicago, the restaurant district surrounding Taylor Street in Little Italy and the West Loop neighborhood to the north. In the midst of so many businesses and in the shadow of the downtown, we know there may be more opportunities for meaningful employment for John. Finally, an urban setting, due to its diverse populations, might allow for “quirky” young men to “fit in” better.

Another initiative of our foundation is to develop social enterprise businesses to provide vocational opportunities for young adults with autism, as well as returning vets and others who need workforce development. This past summer, we launched a pilot community vocational garden, housed in the Illinois Medical District, just west of Rush. Our goal was to learn about urban gardening, health and nutrition and to create a viable path to greater economic independence for this vulnerable population. In addition to harvesting an abundance of produce, all indications of our initial research and assessment of the first year success of this pilot program are very positive. We are busy planning a major expansion for Year Two and we are exploring selling our produce to an  institutional partner and at a local farmer’s market.

The long-term goal of the JMTF and Urban Autism Solutions is to provide a safe and supported passage to a fully integrated community life. Through our initiatives of residential housing, groundbreaking research, vocational opportunities and an alliance with the Rush AARTS Center, we know we are creating viable opportunities and solutions for young adults and families with autism. To find out more about our foundation, go to www.jmtf.org.

 

 

Autism College Free Q & A with Visiting Professor Robert Naseef, PhD on November 20th

Join Visiting Professor Robert Naseef, PhD and moderator Chantal Sicile-Kira in a free interactive Q & A webinar on Tips for Enjoying the Holidays and Managing Stress. You can sign up  here.

Many of us seasoned parents joke that we get more religious during the holidays: we pray our child will not have a meltdown while doing the holiday shopping; we pray that he or she will stay regulated during celebrations with relatives; we pray that we will have the strength to politely ignore the judgments passed upon us and our ‘misbehaving’ child; we pray that our relatives will be more understanding and accepting than at prior holiday celebrations.

We’re happy to have as our Visiting Professor in November Dr. Robert Naseef, who is personally and professionally experienced with the struggles and rewards of raising a child with special needs. On Wednesday, November 20th, at 6:00 pm – 8:00pm PST (9:00 pm to 11pm EST), Dr. Naseef will join us and share Tips for Enjoying the Holidays and Managing Stress. Sign up here  to participate.

Robert NaseefRobert Naseef, PhD specializes in guiding families of children with disabilities at Alternative Choices in Philadelphia.. He is the author of Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability and Autism in the Family: Caring and Coping Together.

 

Jeremy’s Point of View: Person Centered Planning and Self-Advocacy

Jeremy's Team and Friends

Jeremy’s Team and Friends

Guest Blogger: This is a blogpost written recently by my son Jeremy Sicile-Kira for the Autistic Global Initiative. The Autistic Global Initiative recently developed an online training course to train support staff : the  AGI Residential / Daily Living Support Course.  We all know how important training is, this is a wonderful resource!

From Jeremy:

Person centered planning PCP   means that the person who needs supports is at the center of any planning about his or her life. Justly the person must be able to give his opinion even if it is just to point to “yes” or “no”. This PCP is important to having a real life. Self advocacy means being able to really advocate for what you want in life and be ready to let people know what your wants and needs are.

When you need support staff for daily life, it is necessary to kindly be able to make them know what is important to you and to your life. For example the following is important for my support staff to know:

I want friends. Justly I really have a hard time making friends. I nicely need to type  out everything I want to say or point to letters which can take a while. Justly I  need support staff  to help me find places and situations to meet new people and  who can help me to make and have friends. Support staff  have to help me talk to people using my voice output technology.  It is greatly important for staff to support me in writing answers and communicating with others, and not to answer for me. Helping me do that is nice but also necessary for me to have relationships with others besides my support staff.

I need to be given opportunity to use my voice output technology on my iPad. I get less opportunity to interact with people now that I’m not in school. Just using my iPad when ever possible  gives me a voice. Support staff  are nice to give me the opportunity to order in restaurants with my  iPad and not just my letter board. Nicely the voice output app on my iPad is  my preferred communication method  while outside of my house.

Nicely staff need to have an understanding of my real life  goals.  Having support staff who are justly aware of my short term and long term goals is important. Just having everyone on the same page nicely makes a team run smoothly. I think having team meetings really helps remind everyone on the team of my goals. Having short term goals followed through on is a big deal and very important to me. It truly makes me happy just finishing something I put my great mind to. Frankly it also makes me happy knowing that my great team is following through on what is decided is important to my daily life. Nicely every team member should have seen my Individual Support Plan  ISP when they start working with me and we should all go over it frankly at  every team meeting.

Justly having the opportunity to give my input helps me have better days. For example, nicely every morning when the schedule for the day is made I have the opportunity to say what I want to do that day and in what order. Greatly it is just a good way to start the day. Greatly routine is important but so is having fun.

Greatly support staff need to be trained on how to be a communication partner,  and in inclusion.  Justly they need to know how to help me in group situations. It is not easy when you need a device to communicate and staff must feel comfortable in redirecting interactions to me. Also they need to know how to help others feel comfortable in communicating with me.

Person Centered  Planning and Self advocacy are important  to include in every day life for someone like me. Truly my life has meaning because of these two concepts. Greatly I hope all people are given the opportunity to learn them.

 

Autism College Free Q & A with Visiting Professor Lindsey Biel M.A. OTR/L on September 5th

Join Visiting Professor Lindsey Biel M

A

, OTR/L  and moderator Chantal Sicile-Kira in a free interactive webinar  on Back to School Sensory Tips

 Register

r20

constantcontact

com/register/event?oeidk=a07e7xrekxj27cabd90&llr=pi7vyonab”> here to sign up for this free opportunity to get educated

And tell your friends!

 

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