Transition to adulthood: Jeremy is moving into his own place!

August 20, 2014
Jeremy (a bit overwhelmed with so many people invading his space at the same time) and part of Team Jeremy.

Jeremy (a bit overwhelmed with so many people invading his space at the same time) and part of Team Jeremy.

Jeremy is moving into his own place. Months ago, when we found out that Jeremy  received the approval and supports (from the powers that be) to make Jeremy’s dream a reality, I enthusiastically stated in an AutismCollege blogpost that Jeremy and I would be blogging about the process of preparing for this major transition – in the hopes that some of the information would be useful to others.

As John Lennon once wrote, “Life is what happens to you while you’re busy making other plans.”  Here it is, almost six months later, and we’ve had no time to write.  I’ve moved over fourteen times since I was a baby, so I’m no newbie when it comes to moving into a new home. But for Jeremy, moving meant more than just transferring to another living space. In the book, A Full Life with Autism, Jeremy and I described  some of the preparation that has been ongoing for years. Here’s what the last six months have entailed:

  • Learning to be more independent in certain home skills:  Learning physical tasks is challenging for Jeremy due to his visual processing and motor skills. Practicing in a familiar environment helps before transferring the skill to a new environment. We have to break down tasks into simple steps.
  • Learning what it means to be a good housemate: As soon as Jeremy knew that his dream was coming true of having his own place shared with another person; he wanted to know what it meant to be a good roommate. He asked a young man he knows at his volunteer job to have breakfast with him so he could ask him what to look for in a roommate, and how to be a good roommate. He had heard this man talk about his roommates, so he figured he might have advice. Then, Jeremy wrote some simple rules for himself to follow, ie “The first rule is that I need to do my dishes when I make food.”
  • Finding the right apartment in the right neighborhood: Jeremy has always wanted to live in the neighborhood he grew up in because everyone knows him. When he goes out shopping, or walking the dog or to the beach, people stop and talk to him. That’s important to him.
  • Finding the right housemate: Jeremy needed to find someone who would share the apartment with him (each have there own bedroom and bathroom). Jeremy needs 24 hour supports, and the apartment-mate would be responsible for being there most nights. LifeWorks (the company that was vendored to provide supports and supervision to make all this possible) found Jeremy’s housemate.
  • Finding the right staff: We are lucky in that we have wonderful support staff that have been with Jeremy for years, but we needed more people to fill all the hours on the schedule, and LifeWorks  found people that were a good addition to the existing Team Jeremy.
  • Staff training: Because of Jeremy’s communication challenges, training was and continues to be a high priority. New  ‘Team Jeremy’  members receive a certain amount of training so that they- and Jeremy -can feel comfortable and safe as they go about their day.
  • Preparing the apartment: Having the apartment as functional as possible for Jeremy helps him be more independent. Where everything is placed in the cupboards, how everything is organized is what makes him successful in completing tasks. Think about how someone with limited visual skills and limited motors skills needs to be able find and get what he needs for everyday life – that’s what Jeremy needs to be as independent as possible.
  • Having his sister Rebecca’s advice on his décor: Jeremy was very clear as to what he wanted in the apartment (very little) the colors he wanted (solid, no patterns and lots of green) and what he wanted to hang on the walls (a few paintings representing calmness, friendship, love). But he wanted his sister- whom he has helped move away to college and into different living situations there- to help him find the furniture needed in the living room and to help him with figuring out where to hang his chosen paintings and posters.
  • Earning the money to pay for his rent: Jeremy is responsible for his share of the rent, and he wants to earn money from his painting. Mom is helping with the marketing at the moment (anyone want a painting, prints or cards? Contact me!).

There is undoubtedly much more to add to this list, but this is a good start. At time of writing, September 1st is the official date for Jeremy’s full-time move to his apartment.  Just like Jeremy learning the skill of pointing to letters to communicate, being ready to move out away from his parents did not happen overnight. He has been preparing for this transition for many years (read A Full Life with Autism).  It’s a process, and it is still ongoing. There are sure to be bumps in the road, but that’s life. We feel grateful that wonderful Team Jeremy and LifeWorks are here to support him  as he takes the first steps of living his dream.

Preparing to Move : Will mom survive the empty autism nest?

March 13, 2014
Rebecca and Jeremy Sicile-Kira, high school graduation, June 2010

Rebecca and Jeremy Sicile-Kira,
high school graduation, June 2010

When my daughter Rebecca moved away to college four years ago, it was difficult. At the time I joked that she left me living with two non-verbals (my husband and Jeremy) but that is what it felt like. Rebecca was vivacious, energetic, very verbal and social, with friends in and out of the house. I loved hearing the laughter (the sweetest sound in the world) emanating from her bedroom or the family room downstairs.

The other difficulty was the concern I had, like most parents, of how your teenager will do being away from home. Will she make wise choices? Have we taught her enough about staying safe without making her paranoid? Have we taught her enough about staying organized, doing household chores and cooking so that she will be a good roommate once she moves out of the dormitory? (To be honest, she never showed any enthusiasm for any household activities, except perhaps baking chocolate chip cookies from scratch).

Now it is Jeremy’s turn to move out, and I am torn by many emotions. Before, Jeremy’s move was a theoretical construct. Now it is official; word came from the powers that be in recent days. We have been preparing for this moment for a long time; in fact we have been advocating for many years for this to happen. I’ve been bracing myself for this moment for some time, and it is finally here. Jeremy and I have written abut this in A Full Life with Autism, and I’ve discussed it some in Autism Spectrum Disorder (revised).

On the one hand, I am not getting any younger and I am really exhausted from the level of care and supervision Jeremy needs, as well as supporting him in reaching his goals as a writer, advocate and artist. It would be OK if all I did was support Jeremy, but I must earn a living as well, and exercise to stay healthy and strong. We are lucky in that we have some help from the system that pays for some hours of respite and support to Jeremy. But that requires my time and energy – finding, training, supervising staff and teaching Jeremy to have a larger role in that. Thus why I have little downtime or social life.

But the wonderful support staff who are in and out of here with Jeremy for part of the day have somewhat filled  part of the void left by Rebecca in terms of young energy and vivaciousness (obviously they could never replace her as my daughter!). I realize when Jeremy moves out, not only will I miss him, but I will miss the support staff and Handsome the dog. As a writer, I have at times missed the lack of privacy with people and Jeremy coming and going in the house, but I realize that the Afternoon Angels and Jeremy’s Team have been an important part of my social life for some time now. And when Jeremy goes, so will they.

As we start telling friends and family Jeremy is really moving within the next six months, the most common reaction is “you won’t know what to do with yourself.” Actually, I have a pretty good idea – focus on my health and exercise, work on a pilot program that is currently in concept stage, accept more speaking gigs, earn more money to help pay for Jeremy’s housing costs (and Rebecca’s college loans),  write that book I have always wanted to write (it doesn’t have autism in the title!), and sleep a bit more. Most of all, I will be able to live spontaneously: not have to check the schedule to make sure I have ‘Jeremy coverage’ before saying yes to some much needed ‘me’ time – taking a walk, having a cup of coffee or glass of wine with a friend, going to the movies with my husband.

I know it will not be easy emotionally speaking – I will miss Jeremy, just as I missed Rebecca when she moved away (and still miss her). But I know we are very connected, and nothing will ever change that.

Jeremy and Rebecca Sicile-Kira, college students

Jeremy and Rebecca Sicile-Kira,
college students

 

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

September 29, 2013
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.

 

Life with Autism: Mighty is the Fear

September 23, 2012

Two caregivers were arrested this past week in Valley Center (near San Diego, CA) for allegedly abusing a severely autistic non-verbal young man in his home. They had been in the family’s employ for over two years and were caught on videotape over a three week period.

This is a parent’s worst nightmare come true; and if it’s a nightmare for the parent imagine what it is like for the victim.

According to reports in the media, the mother, Kim Oakley,  saw changes in her son, Jamey, indicating he appeared to be unhappy on the days following the men’s shifts. Kim also realized Jamey was trying to communicate something to her. When she questioned the caregivers, “They blamed everything on his severe autism,” according to newspaper reports. Kim set up a surveillance camera after noticing that the wires to a baby monitor had been cut. Videos shot over a three week period led to the arrests.

My heart goes out to Kim and Jamey and the rest of the family. Unfortunately their story is not unique and it highlights the difficulties of all families requiring caregivers and support staff for their severely autistic loved one.

How often do we hear about a non-verbal person that “his behavior is due to his autism”? Bull! All behavior is communication and Kim, like most moms and dads, know this. Watch “Autistic Cases ‘Autism Experts’ Run From”    that Kim Oakley posted on YouTube. Jamey’s behaviors  in this video were particularly bad because he had a Urinary Tract infection and once it was diagnosed and treated, he was better. But is took five days to get it taken care of.

Recently my autistic son Jeremy was in so much pain that he became hyper and aggressive and kept trying to take showers as if that would help. Nothing could calm him down. We had never seen anything like it before. He was uncontrollable. We were lucky he could type and tell us he was in pain. But it also took five days to figure out why he was in pain, and a week to be able to do anything about it. Turns out is was due to a change in the generic brand of his medication for epilepsy – we were not warned that any changes in the brand could cause such reactions. You can read Jeremy’s comments about his experience here.

To top it off, the lack of understanding and caring from some of the people at the pharmacies we had to deal with was appalling. Seeing your child suffer and not being able to do anything about it is excruciating, and when those supposedly there to help are not treating the situation with the urgency it warrants is unbelievable. As parents, we try to remain calm and act ‘normal’ and polite so we won’t be taken for one of those ‘crazy  parents’.  We are not crazy.  But we have no patience for not being taken seriously and being dependent on people who just don’t get it. Believe us when we tell you our child is in pain and we need help NOW.

When you have a non-verbal child or a child dependent on caretakers, there is always the risk of abuse, and not just at home. The same risk exists in residential facilities, community living options and even in day programs, camps and community activities. To this day, my son Jeremy suffers PTSD due an abuse that occurred outside the home years ago. He still refuses  to participate in any activities that are not inclusive, that are intended for developmentally disabled participants. As he puts it, “They are grouping the victims.”

Although Jeremy received therapy with some help from the California Victim Compensation Program, he continues to have panic attacks which impact his ability to participate in all that he would like to do outside the home. Recently he had flashbacks and he would flail out and hit whomever was standing close, ‘seeing’ his aggressor. This adds another dimension to hiring and training staff.  As well, it leaves  Jeremy feeling terrible about his outbursts. Dealing with PTSD has become  important to him and recently he completed a painting about his PTSD entitled “Mighty is the Fear.”

Even without thinking about abuse, finding people who understand the importance they have to a person’s quality of life  and the willingness to make the commitment is not always easy when someone requires 24 hour supports. Recently, one person who was hired and trained as a support person and communication partner for Jeremy decided to extend their vacation from two weeks to four weeks, meaning the person would not be around to support Jeremy at either his college class or after school doing his homework at the beginning of the school year as  expected.  This was a big blow to Jeremy and to his ability to attend college successfully.

Most of our experiences with support staff, service providers, medical professionals and others have been extremely positive. Usually I focus on writing about  positive  experiences and strategies, but hearing  about Kim, Jamie and their family’s experience with the two caregivers hit a nerve and I couldn’t stay quiet.  I feel terrible for the family.  Stay strong, Kim!

Trying to learn from all our experiences and focusing on the positive relationships we have forged over the years due to Jeremy’s need for supports is how we continue to survive and thrive.  As Jeremy put it in A Full Life with Autism (Macmillan 2012), “I learned there were really bad people who could do things to your body, but I learned that you don’t have to let them in your soul.“

Ain’t that the truth!

 

Autism in the House? Keep Calm and Carry On

February 20, 2012

“ I am frankly not acting nicely to new support staff.”

When it comes to autism, some things get easier and some things get harder as they get older.  Neurotypicals at 23 can be ornery, and so can 23 year olds on the spectrum.  Some things don’t change.

Although the transition to the teen years can be difficult; the transition to adulthood can be even more challenging. It’s a balance between giving them the freedom to make their own decisions, and providing the familiarity of structure  they seem to need.  Some days can be tough. On those days, I think of the British war poster given to me by a friend that I have hanging in my office.