When I was a small child, I went everywhere with my mother. Mostly we went grocery shopping. That’s what we told my dad: “going shopping.” Really we went to homes of other parents who had children with serious disabilities. My mom was a great resource for people — people who were housebound because of the needs of their child. I remember going grocery shopping and then “just stopping by” someone’s house while we were out. These were really check-up visits where my mom checked in on her friends, brought them much needed groceries, and had a cup of coffee with them. As a result my earliest recollections are of being surrounded by individuals with various significant disabilities.
I’ve never shared this with anyone, so it’s our little secret, okay? At some point I starting hiding upstairs and “practising” various disabilities. I would go blindfolded. Stuff my ears. Hop around on one foot. Not talk for a full day. My father caught me one day. I didn’t know he was there. I was blindfolded and had plugged my ears. I had advanced to multiple disabilities. He grabbed me by the shoulders and when I took off the blindfold it was quite shocking to look at him. I thought his head was going to pop off his neck. I could see it getting bigger and bigger like a cartoon. My instinct was “run for cover” but he still had hold of my shoulders. He spoke very quietly and slowly… “Jesus…Mary…and…Joseph…what…are… you…doing?” Stuttering I explained that everybody has some sort of disability and I wanted to be prepared when it was my turn. After saying a prayer, he “sat me down” to talk about it. He told me that he prayed that it would never happen. And if it did, we’d deal with it then but it wasn’t something any of us could prepare for. Just because they had Walter, they really were no more prepared when they had David. I listened to my Dad’s advice. I stopped practising. But, one thing I didn’t share with my dad that day was that from my first moment of conscious and reflective thought, I thought: “that should be me. ” That I was the one who was meant to have disabilities, not David. Statistically, the youngest of 11 children. My father 52, my mother 40 when they had me. What were the odds that *my* development would be more typical than David’s?
Guilt can stop you in your tracks, or it can propel you forward. You may be the primary caregiver, or you may be a sibling who has never even met your sibling with developmental disabilities. In either case (or anywhere in between) you may feel various feelings related to your relationship with your sibling. For myself, I have recurring feelings of guilt, and I work to deliberately manage through them. Here are a few tips that I have found to help me continue to move forward:
- Name it when I feel it. Ah, the guilty conscience. When I can name it, I can figure out why I feel that way and at least try to do something. I’m a do-er. I always feel better if I at least try to do something.
- What is it other than guilt? Don’t be afraid to dig deeper. What else am I feeling? Anger? Resentment? Frustration? Sorrow?
- Give myself permission to have the full range of emotions and don’t get angry with your self for not being your “best self.” My “best self… the vision of the ideal caretaker.. is my mother. Now that’s something impossible to live up to!
- Make sure your behavior is aligned to your values. Whenever I cross over the “value” line, I feel that in my gut right away. I call this the “gut check” and I always know there is something I need to do in my own behavior when this has happened. I remember the one day when I was in elementary school and my brother’s class was paraded across the school yard. It took me by surprise. The class never ever came out when everyone else was out. I was prepared at home, on the street, on our porch. But, I wasn’t prepared at school when the school kids started chanting the “R-word.” I did nothing. Paralyzed. I was sick with myself for, well, forever (gosh, it still makes me sick when I recollect it). That never happened again. I was never unprepared again. Gut check.
- Oh, I guess my last personal tip is: Confession is good for the soul 🙂 Hence this blog post! I feel better already! Share with others. It might not be within your family but you can always share with the sibling leadership network: http://www.siblingleadership.org/
If you are a parent with younger children, you might want to take a look at sibshops: http://www.siblingsupport.org/about/copy_of_index_html. Get your children talking to others in a safe environment. Like me, your children probably have things they would never confess to you.
If you have any recommendations to share with others, I hope you will post them here.
Postscript: You know, the upside to my survivor guilt?1) I believe that every life has value — mine would have no less value if I was born differently 2) In addition to value, I have the opportunity to give my life meaning. 3) I wake up everyday giving thanks for what I have .
Yours in community,
NOTE: Thanks to “Missy” who posted a question about working with direct supports professionals — balancing between trying not to upset the boat (upsetting the DSP staff) and standing up for the rights of your sibling. First, as my brothers Direct Support Staff will tell you, I do not have this figured out. But, I will share with you what I learned, what seems to work, and what still frustrates me. We welcome and encourage other people to comment.
Background: In our case, David is not personally responsible for hiring his own direct support staff. We work with a provider. The provider hires the staff, assigns the staff, there can be good matches and bad matches. And, of course, there is staff turnover. When you’re talking 24×7 supervision, that’s a lot of people. David and I made out holiday cards for 12 different individuals just for his residential care. There are individuals who come and fill in shifts. Temps. And then there are day program staff. I do not know who is with my brother at any given moment. I mean I don’t know which person is with my brother and often if I did know who, I wouldn’t know who they are. That is the frightening reality.
Speaking of the frightening reality, here are my top 3 daily fears:
- Fear of overloading “the system”. Too many complaints, you become just 1 big complaint and then you are completely ignored or humored.
- Fear of letting things slide. Wrong-doings swept under the carpet, then you haven’t done your job as an advocate. A little bit sliding all the time can snowball into an avalanche.
- Fear of retaliation. The worst fear is a concern that if you really piss off a direct support staff your sibling may suffer at their hands — either through neglect or worse, through specific actions. My brother is vulnerable, dependent on 24 hour support, and cannot call out or run away. For those of you with a family member who has more severe disabilities, more medically engaged…you know that an act of omission can have dire consequences.
Fear and Trust
I want to be aspirational. I work hard to live in continued hope of a fabulous future for my brother. The problems, however are in the “now.” And the consequences are tomorrow… when I have gone and David is alone.
Fear is the dark side of the lack of trust. Last year, I did some best practise research in a different state. I went to a provider who was really working community living. I wanted to see how another state and agency managed this best practise. I spent the day with all of the staff and shadowed them on their jobs. Finally at the end of the day we had a roundtable discussion. I asked: “As a family member, how can a person like me (in my role) work most effectively with people like you (in your role)?” Every single person sitting around the table said “you have got to let go of some of the control, the details, and trust in us.”
I reflected on this during the long drive home and repeatedly afterwards. They have a point. I don’t trust. Why not? The risk is too high. My brother, Walter, choked to death eating a peanut butter sandwich (he had known trouble swallowing — no gag reflex — and “shoveling” and was left alone in the kitchen with peanut butter sandwiches left laying out). I confess that I will not be able to suppress this fear. And this fear is exacerbated by the frequent anonymity of the staff on any given day. I try to find ways to manage the fear factor. Daily. I absolutely must concentrate on the positive.
What Seems to Work
The hardest thing is coming to terms with “least bad” reasoning. Let’s face it, if you have a loved one in any type of care facility or care program you are often faced with making “less bad” decisions instead of great decisions. I long for the time when our reasoning and decision making is aspirational versus less injurious. This is my hope for the generation coming of age in the next 10 years.
- When I can’t hope to learn all the staff, I have gotten to know the management and supervisors in charge of the day program and the residential program. I have their phone numbers on speed dial in my cell phone. I talk to them throughout the course of the year. Not just during planning meetings. I call meetings so that the IDT meeting is not the only chance to talk.
- I work hard to provide materials to let people get to know David. Last year I put together this little pamphlet for David’s staff so they could quickly get to know him (David Fialkowski, All About Me). It was good for temp staff. It worked for a couple months. So that’s something else I learned. What works is stuff that is standard, repeatable, constant. That’s what the “system” is set up for. My “try this try that” — doesn’t work. I used to be disappointed. Now I’ve learned that I need to do things that can be reproduced, not just for David but for other individuals who are served by the same provider.
- I constantly pick and choose my battles. This is relatively new. My mouth was on auto-pilot: see something, say something. I had to learn (still learning!) to automatically filter and prioritize. I prioritize based on a) most important first (health and safety) b) treating David like an individual with self determination c) things that can help the other individuals as well as David. This filtering leaves me unhappy. There are battles I swallow like the fact that the day program building management asked them to ride up in the service elevator. Or that the office doesn’t have a wheelchair button to automatically open the door (why does it need one, there’s always staff with them?)
- What could I do better? I could make more of an effort to get to know the people around David. But, what would be even better is if there was a circle around David so that it wasn’t just me. More people calling his house and asking “who am I speaking to? how are you today? how long have you been working with David? do you have children? how long have you been working in the field,” etc. I just don’t have enough hours in the day. I just about manage asking about David. As I mentioned in a previous post, everyone needs a circle. Share the load, rotate the calls. I hope you have one! I mean, wouldn’t that be a great idea: to set up a calling circle? Rotationally call on each other’s families? Use a contact database like sales people do… maybe even call people who are in “crisis” and check up on them and their care … but I digress….
Treasure Those Who Work
There are plenty of support staff who do a great job. And when you find one, they are a gem. My brother has had some staff stability in the last few years (since he moved to his new house). For the moment, we have staff who’s concerned about David in a long term basis. We form attachments as a family. We can invite these people to accompany David to family weddings, professional events, etc. And once there is some staff stability we can start talking about things like self determination, using the iPad for communications, going places specific to David’s likes, hopes, dreams.
What’s YOUR Situation?
What have you found? What works? How do you keep an open dialog? Do you know your DSPs? Please share, we can all learn from each other…
Yours in Community,
While on the road for the Envisioning the Future Summits, I learned quite a bit about AAC (Augmentative and Alternative Communications). These are “devices” that sit like a tray in front of an individual. The individual can use an eye gaze, some sort of typing, word selection, etc to pick and choose their way through a vocabulary to communicate with to other individuals. Sometimes the process of communicating with these alternative forms of communication can be quite cumbersome especially if the recipient of the communications a) doesn’t understand how the process works or b) is in a real hurry. I met one woman and in trying to carry on a conversation with her, her assistant said: “Shorthand is to ask yes/no questions. She can move her eyes to signal yes/no.” The woman and I had quite a detailed conversation using only yes/no and avoided the AAC all together. I’m not saying avoiding the AAC was the right way to go. But I am saying that learning both options was an important process for me. And I realized just how much we can talk just with yes/no responses.
Flash forward to this week. I spent a couple days with my brother David. David is not verbal. Yes, he communicates. He vocalizes. He lets you know when he is unhappy. He laughs when he is happy. But, I wondered, instead of happy or unhappy could it be possible that David could answer YES or NO questions? David is unable to use flash cards. Those flat pictures or words have no meaning to him. But, David does respond to verbal requests. I wondered…
I never tested a DynaVox or some such with David. These devices cost between $5000 and $10000. Today I realized I have an iPad! I heard several people at these summits mention that there is software available for the iPad. I went on line and queried AAC for iPad and came up with several options:
- Proloquo2go. Costs $189.00. Thats a good price compared to $5000.00.
- TaptoTalk. $99.00.
- MyTalkTools. Cost $34.99. Yes, that’s right, under $35.
- YesNo. Cost $1.99. Yes, you got it under $2.00! Two options: yes and no. Man/woman/boy/girl voices. And the option to program in other pairs of words and record the text!
Here was my big moment today. I simplified the MyTalk so that it only showed 2 options on the screen. Yes and No. I mean, lets just start with the basics.
“David, would you like something to drink?” (I hit yes, I hit no. I did this repeatedly and then showed David how to do it. Repeatedly.) “David, would you like something to drink?” David extended a finger and pointed. I showed him he had to tap the screen. Tap, went David. “Yes.” I hurriedly got up and got him something to drink. No, I didn’t sit and offer 25 options. Yes, he said, and I wanted to get something in his hand immediately.
I tried this for an hour. Various questions. Yes/No responses. David sometimes answered yes, sometimes no. It was getting late. I cleaned up all the glasses and other things I brought him from the yes/no questions. Time for one last question: “David, its time to go home. Do you want to go home?” He looked up at me and shook his head. He reached up to the iPad and hit “No.” Was this a fluke? I moved the iPad so this wasn’t a ouiji answer, guided by me. “David, do you want to go home?” He looked up at me, reached out with a finger and hit the iPad. Tap. Tap. Tap. Tap. “no, no, no, no.” Forget about going home, iPad aside, we went to the living room and sat on the couch. I had nothing to say.
My brother is 48. I am 46. This is the first time we had a conversation of any sort. It was a really big day. Thanks to the iPad.
I have to figure out how to buy one for him a) without worrying about theft and b) teaching staff to use it with him. Perhaps this is our 2011 goal.
Now I wonder… how do we get these devices in the hands of every school aged child with developmental disabilities that could benefit? Is there a donation program? I found one for children with autism: HollyRod Foundation. I saw some individual classrooms requesting them in DonorsChoose.org. But, come on, this is perfect for Best Buddies, Special Olympics, or the Arc to pick up. If you hear of anything like this, let me know.
I’m obviously not the first to report this news. All I can say is when it happens to you, you’re the one who becomes speechless. Other articles can be found here.
A friend of mine asked me what I thought about a residential placement option he saw. He’s thinking of the future for his children with Developmental Disabilities. After a very long-winded response email, I decided “Hey I should put this to perspective to greater use.” How bout a little advice from “the other side.” Honestly, let’s put it out there. Your number one worry is “what will happen to my child with developmental disabilities after I’m gone?” And the follow-up “how can I ensure their safety.” Yeah, many of you talk about big dreams for children but really, in your guts, you think “safety.” ( Some of you, secretly are going one step further and you’re thinking “surrogate.” After all, no one can love them like you do, right? How can you find a place that will care enough?) As a sibling after 15 years I can tell you that I wonder “what if I should die before my brother?” And “how can I ensure his safety?”
From the vantage point of 16 years AD (after death). Knowing what I know now, here’s what I wish I could have told my parents. Mom, Dad, there are certain rules of nature that you simply have to acknowledge. I know it’s hard because of the implications. But they’re real, let’s talk about them.
The rules of nature
- There is no permanency. Whatever solution you find — residential, day program, employment, etc — it cannot be permanent.
- There are no guarantees. However much you plan, the unexpected will emerge.
- Walls do not protect. They hide.
- Even children with the most severe disabilities will have to cut the cord. Ultimately they will leave the nest.
- Risk exists for everyone. There is no way to eliminate all risk for your child. You have to get comfortable that there is a level of risk you must take.
- I am a sibling. Stop worrying about giving me an “obligation” or a “burden.” You have given me a brother. Family takes care of family.
- Given these rules of nature I cannot promise you that I will keep everything just the way you set it up. I’m sorry. I’ll keep it that way as long as possible but then at a certain point I am going to have to make changes. I promise to be mindful of your values and David’s needs and desires.
Given all of the above…. As parents, its expecting to much of yourself to find the “golden solution.” It’s not feasible. So, let’s go with you’re finding the best solution today. What is the most important thing to do? Develop a “circle.” Develop a multi-generational social circle surrounding your child. Ensure that you are not the only person in your child’s life who is not paid to be there.
Take it from me. It took me 15 years to understand this simple point. Inclusion isn’t about a house or a trip to the park. It is not about how many times you “get into” the neighborhood. Its not something I can write 5 goals for on an IDT plan. It simply means that an individual is not alone. That they have their own “community/ies” (friends, family, people with shared interests and goals). These people are not paid to be part of the community. To be disenfranchised? To be on the outside of communities versus on the inside? This is what makes a person invisible. Being invisible makes a person vulnerable.
Surely, as a parent, you can understand this. You’re worried about who could possibly replace you? NO ONE CAN REPLACE YOU. It will take a village of people to care as much as you care. To replace the eyes on the back of your head. The one thing you can do (do early, do often, never stop doing) is build the village. If your child grows up living within the village you build, they will always be a valued member of the community and a derivative fact is they will be less at risk, more fulfilled, and reach their full potential.
What parent wouldn’t want that? Start building now.