David’s 50th Birthday Party!

David’s “Family” at his 50th Birthday Party

On St Patty’s Day we celebrated my brother David’s 50th birthday.

About half of us were able to make it. Yes, believe it or not what you see here is only half of us! It was a wonderful day, a lovely event and people are talking about it. I hope that when everyone thinks of the day they will remember it as David’s birthday but I think that already the idea that it was David’s birthday is evaporating and people are really remembering it as a family reunion. That key here is that it was a memorable event because it was a family gathering with David included actually at the center of the gathering.

Back in the day — before mom and dad passed away — everyone used to come “home” for the holidays. Brothers and Sisters and their spouses and their children would come to the house and spend time there. There were so many of us that families would come in rotation. Even still, come they would. Now that our parents have passed away, we don’t have that family “hub” that we used to have. It occurs to me that for the majority of our family we have not seen each other in any major grouping since those days. And they were long ago — before 1994, 1996.

At the beginning of the party we took a moment of silence in quiet contemplation of all those who have passed. Our parents. Our brothers and sister. Our grandparents, aunts and uncles. Looking around the room the “little ones” who used to sit at the “children’s table” are all grown up with their own little ones. It was shocking to me that we are now the elders!.

My nephew Christopher set up music and a playlist with his iPad. He was the “DJ” for the event. I was standing next to him and he said something like  “I dont know anyone here. I’ll bet others don’t. Are you going to get people talking?” And so we began “calling” — getting the little kids to come up and answer questions like who can do spock fingers and other recessive gene traits. More than 50% of the people in the room have light colored eyes. 30% can do a clover leaf tongue. And the blonde spot at the back of the head is more prevalent than most let on.

The best part of the day of course is that David loved every minute of it. He loved being the center of attention!

He loved having people read to him… Several people read David his birthday cards…. He loved being the center of the photos, although his fave is with his girlfriend Gina. Every time David is looking away in the photo, follow his eyes and you can see that they are glued on Gina. He loved dancing with his brothers and sisters (and Gina!)

After Party!

And he loved the after party. The after dinner.

The night time remembering the party.

Wishing us all many more days like this.

Here’s to David Joseph, Happy Birthday, old man .

Speaking “On Behalf Of”

This is something I struggle with constantly: what’s the right thing to do when “speaking on behalf of my brother?”

 

My brother David and I have a unique sibling relationship. Though there are many siblings in our family,  I am David’s primary advocate. I am often in the position to put David’s needs and desires forward in some formal matter, for example, getting them into his annual supports plan. In these cases I think of myself as his advocate and representative.

David can express himself and he does communicate what he wants. But he has a unique language and for some things you have to be around David a long time to understand what he is saying. You have to be patient in the moment. And, of course, you have to be listening. In an east-coast, sound-byte society, David’s voice gets lost. And as his voice gets lost, little by little David erodes away. Drifting out of lives of family members and friends. Losing old relationships. Isolated. Eventually succombing to a routine established by the provider program. David needs support so that his “voice” can be heard.

Over these many 15/16 years I have really struggled with figuring out how to represent David while not diminishing him. There are two extremes on the spectrum. At one far end, self-advocates call it “speaking for ourselves” and while I am a fan of that particular thought, I just don’t know how to employ it with my brother. At the other end of the spectrum, I’ve heard parents say “I am my child’s voice” and “I speak for my child.” I struggle with this position as well. Both are extreme points of view.

I’ve tried to find the middle ground between the two. My personal key is to enter those settings extremely conscious and intentional about communications. Whenever I am in a setting where I am advocating for David before I speak, I break my thoughts down like this:

Who are you really representing at this particular minute?

1. Is this something in which our family has a strong belief? If so, then I see these as moments in which to share our belief system and to ask people to adhere to our beliefs. For example, we believe in community inclusion and therefore we fundamentally that David should be a valued member of society and our desire in planning is to help him achieve that goal. This is the basis from which I entered all early annual Individual supports meetings. I was set on upholding what my parents wanted.
2.  Is this something David has expressed an opinion about? If so, I see these as teaching moments where I can put forth David’s opinion and help people see that David has expressed that opinion. For example, I have seen how David reacts adversely to being in large crowds of people pressing forward. He has a whole series of behaviors, vocal and non-vocal that make his irritation, discomfort, and even ire clear. Therefore, I can say “David doesn’t like this and this is how he shows it. Therefore, let’s not do that.” On the other hand, David loves going to the Diner. We know because when he goes there he is relaxed, happy, smiling, laughing etc. Therefore, let’s schedule the corner Diner on a weekly basis. The more time I spend with David and talk to his staff then the more I learn and the better I can represent his own opinions.
3. Is this something in which I have a personal opinion and desire and I think my idea is good for David? Ah, this is the most tricky one. I got David a membership at the Art Museum. Does he really like going to the Art Museum? I do not know. I do try to be clear in my own head that this is my idea and not David’s idea. Why? I have a bias that people are not stagnant. They grow and to grow you have to take risks. The latter is an important key. With my ideas, I try to find opportunities to expose David to new things and then to watch him, listen to him, and learn about him. After which I feel that we can then see what else he likes, wants, needs etc. and pump that back into bullet 2.

I don’t know about you, but balancing me/he/we is a real tough thing. I don’t always get it right. But I never stop trying to get it right. Oh, and I never stop asking “Who am I representing? Who is this for?”

Yours in community
Kate

Self-Determination, We Have Lift Off! (thank you iPad)

My brother, David is a habitual watcher. He was always this way. As children, I would sit and play and he would sit and watch me play. He was never interested in fictitious, symbolic, or representative things. Only real people, real interactions.

Over Christmas, I introduced David to the iPad. David and I played Virtuoso piano together. To sit and play piano together, this was really something. Through tapping on the screen, having tones emit, David found a way to interact with me and I with him. And each time I think about that day I think “Forty-some years, and that was the first time we had a “back and forth” conversation.”

Once I handed David the iPad, we tried a variety of “aps” or applications. Movies, iTunes, games, piano, AAC communications. Our roles reversed. I was the observer and he, the primary doer. David engaged with the surface of the iPad easily.

Historically, there have been many barriers to using AAC devices: (Source) This includes policy, practice, knowledge, skill, and access barriers. My brother, David, was impacted by all these barriers. Throughout his school years, barriers existed suggesting that his intellectual disability precluded the need for him to have AAC. The degree of fine motor skills precluded the capability to have AAC. The cost was prohibitive for our family to trial, and forget about buying (when the policy barriers precluded it). It was these same barriers that eventually made David a prime candidate for “Facilitated Communications.” Facilitated communications was considered a breakthrough method of communications for individuals who did not speak verbally. I was living out of the area at the time and I remember when they called me and put David on the phone and “he” said “I love you.” I was at work and cried like a baby. And then I thought, a) hey I have 8 other siblings and I know “us” — the first thing all of us do is tell a joke–we do not tell emotions! and b) who’s pressing the buttons?

So back to the iPad. Who’s pressing the buttons? No keyboards, no pens, no pointers, only a beautiful surface area. No requirements for fine motor skills. Can’t tap? Slide! Can’t use a single finger? Use your hand and swipe! ). Graphics? Traditional symbolic pictures sure, if you want them. But real pictures or even videos can be used instead! Audio? Synthesized voice? Sure, if you want it. But how ’bout real voice? Mom’s who record for their sons — you can “bend the pitch” so that mom’s voice now sounds like a male voice — you can record and yet give your child their own voice. It has an easy touch, crystal clear visuals, and terrific audio. And David can hold it in his own hands. It is light, portable. He can hold it. It can rest on the table. It can be his. For the first time AAC can be small enough and customizable enough to be ”personal.” And the myriad of aps means that this device can be truly an external extension of David’s unique self. And still “standard” enough for others to understand and interact with him without a PhD!

I admit that I’m a steadfast zealot. Why?

Yesterday, my sister Mary and I had an iPad meeting with David’s provider. 8 people + David, Mary, and I. There were several people in the room who had not been present for the previous discussion and so, although David was taking a break out of the room, we decided to review the background for the meeting. I explained that Mary and I had thoughtfully loaded applications on the iPad that were specific to David, his potential likes (we all get bored or change our minds), and also specific to the way he uses his hands. For example, every ap had a very large surface area and therefore did not require finger pointing precision. Full-hand gestures would work equally well. If David were to place his hand on the screen, a response would happen. And the screen would also pick up micro-gestures: small, almost invisible movements in David’s hands. These micro-gestures might come from small twitches or they may also be David’s reaction and engagement with his environment. Also, through the applications — even non AAC aps – David could make choices about what he likes and doesn’t like (self determination!) and communicate that to you!

We sent around Koi Pond for everyone in the room to touch and feel. Touch the screen and “splash!” it is as if you traipsed your hand through the water of a pond. Around the table it went” Splish-splashing all along the way. David returned to the room just as the iPad came back around. I put the iPad in front of David and explained the koi pond. David had not seen Koi Pond before. I traipsed my fingers on the screen: splish-splash. I gently placed his hand on the screen (splash) and on top of his hand I tapped my fingers. I tapped my fingers on the screen: splish-splash. I left him and continued talking. David sat there. His hands did not appear to be moving and yet we heard quite a volley of splishing and splashing. Micro-gestures! Eyebrows raised all around the room (including me and Mary!)

Another application around the table: Pocket Drums. Thumping, bonging, Binging all around the room. Back to David. David had not seen Pocket Drums before. I tap the screen: Thump, Thump, Bing!. I place his hand on the screen: Thimp-thump. I tap the screen again: Thump, Thump, Bing! and leave him alone. We continue talking. Micro-gestures. Thump…. Thump…. Thump…. David smiles. He lifted his left pointer finger high in the air and dropped it. THUMP! He smiled. Everyone stops talking and watches David. He does it again repeatedly. THUMP THUMP THUMP. He laughs. He starts tapping all his fingers — individually! Thump, Thimp, Bing, Bong! David is laughing out loud and brings his other hand over and is playing drums. He is laughing, smiling, shaking his head — David LOVES it. And the room bursts out in joyous laughter.

We all calm down and keep talking. I pull out virtuoso piano. It can play a duet — a keyboard on each side of the screen. Something David and I had enjoyed doing before. I put it down in front of David. No one is talking. Everyone is watching. I tap C, I put Davids hand on the keyboard. F. C chord badly played by Katy. David hands move. Notes play and then he is agitated. He is shaking his head. Then his body. Then he starts yelling. David is one unhappy unhappy man! “David,” I say, “this is simple, you don’t like it so we can just push it away.” I push it away. He lifts his hands off and looks at it. Gives it a little push. He looks up at me, smiles, and relaxes. Everyone around the room has an “Oh” face.

That’s what I’m TALKING about: COMMUNICATIONS. Self-Determination, we have lift off!

Buy it! Buy TWO. Get on board the iPad train buy one for your child, family member AND one for a friend. It will be worth every penny you saved up. Get involved, get your school involved, get your provider involved. And, let’s get Apple involved!!!

Yours in community,
Kate

Sibling to Sibling: Feelings of Guilt

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?

SURVIVOR GUILT! 

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,
Kate.

Sibling to “Newly Minted Siblings”

There are a number of guides for “new parents” – parents of children diagnosed with developmental disabilities. They inspired me to share a few thoughts to those who may be newly indoctrinated into this redefined sibling role.

“Grief stricken. Depressed. Overwhelmed. Add in all the stages of grief, too!”

Even though my parents and I had many talks about what would happen after… meaning after one, and finally both, of them died… I was still unprepared for what was to come next. The responsibility of another person. The oversight of a support services. The comparison of myself to my mother. The guilt for falling short. The fear that my lack of knowledge, time, insight, would result in serious impact to someone I love. The fear of failure. Uugh. The depression I felt at the lost of my parents (my father having died just 2 years before) deepened with the feeling of being overwhelmed with this new responsibility. As the “chosen one” I felt very alone in this obligation and I was not mature enough to know how to manage it with my siblings. Further, as my parents had done, I felt that this was my responsibility alone and that part of my assigned job was keeping the “responsibility” of it from overflowing to my siblings.

Grief had a compounded meaning. Grief over the loss of my parents. Grief over becoming an “orphan.” Grief over what I thought was loosing my old self to new roles and responsibilities. That was a lot of grief to get through. I’ll be honest, it was not easy. Not straightforward. And it was not quick. And to this day I have occasional bouts of grief and sorrow. On the positive side, it is now more like “I wish my mom could see this!”

Role Redefinition

My first mental step was role redefinition. I had to define what my new role was to become.

At one end of the spectrum was the “caring sibling.”  The sibling who loves my brother. Who has an interest in his life. Who has him come to the beach on occasion and tries to remember Christmas presents for him. This was my original role. I liked this role. It was comfortable.

At the other end of the spectrum was my mother. My mother’s full time job was managing David’s supports services. She was often at his house. He was often at her house. She called the house every night. She had meetings almost every month. She knew every staff member by name. She remembered their birthdays, etc. She told me this was part of the package… once David moved into the community the relationship was no longer just with David. The care was not just for David. But now She was hyper involved.

What can you manage? What does your sibling want? What does your sibling need?  What I have learned over the last 15 years is that my role moves along the spectrum between the two points. Some years I can be or need to be or want to be more involved. Other years, I am less involved. It is not a constant. And, there is no relationship in my life that is completely constant in the amount of time, energy, and dedication — I can celebrate in the normalcy of this instead of beat myself up about it.

For those of you in the throes of this … I’ll bet you understand me when I say that

I have finally, after 14 years, forgiven myself for not being my mother.

Gather Information, Build Your Advocacy Skills, and CONNECT

 Parents learn about advocacy and working the system as they have been doing it even before diagnosis (in order to get a diagnosis!). Siblings are often sheltered and isolated from those learning experiences. Siblings are often thrown into advocacy when they are least able manage it – at a time of great personal stress and grief. Further, systems are not set up to recognize siblings as advocates. Siblings are often barred from accessing important information (HIPPA regulations), they are isolated from the processes, may be physically distant. There are a lot of barriers to overcome and frankly it’s easier to give up, hand over the care to a caregiver, and rest at the “family” end of the spectrum I mention in role definition, above. If somehow you land on this path, I understand completely! I also know that it might nag at you over and over again and the longer it goes on the LESS you feel capable of doing because the problem seems to be getting bigger!

Those of us with responsibilities must minimally practice “no regrets” advocacy.

Being a sibling, there’s nothing left of ourselves to practise “woulda coulda shoulda.” Here are three levels of involvement for you to consider.

 

LEVEL ONE: SECURITY … ADDING A LAYER OF PROTECTION AROUND YOUR SIBLING WITH DEVELOPMENTAL DISABILITIES

You absolutely must play some role in the life of your sibling with developmental disabilities. At the very minimum, in any setting, you want the provider to know that this individual is connected to a family that cares. If you do not do this, it puts your sibling with developmental disabilities at risk. This means, sending cards, calling to check on your sibling, and (if your sibling is living in a provider setting) on a regular and unscheduled basis you must go visit your sibling.

If you are not the sibling who is the primary caregiving/advocate you should still do these things! Even if you have to come in from out of town for a day. Why? You must increase the odds of safety. This is true if your sib lives in an apartment on their own, in a house with others, in a group home, and certain if they live in any congregate setting. Let me give an analogy. They say that if you have the sign of an alarm outside your house that is almost as good as having an alarm inside the house. This is what I’m talking about. The simple fact that you have some level of involvement helps put a level of security around your sibling. It says “someone is watching.”

Note: this might be ground you have to work out with your sibling. You don’t want them to feel that you are negating them or being too overbearing. So talk it through with your sibling so they know what’s going on.

LEVEL TWO: ADVOCACY… ADDING VALUE TO THE LIFE OF YOUR SIBLING WITH DEVELOPMENTAL DISABILITIES

Okay, so you want to do more. You want to be involved. And you want it to matter. First and foremost, you have to be the watchdog of the RIGHTS of your sibling with developmental disabilities. Can they watch out for their own rights? Encourage your sibling with developmental disabilities to get involved with a self-advocacy organization like Self-Advocates Becoming Empowered . Other self-advocates are great peer mentors and can help support your sibling in their own advocacy. At the same time, you should learn the rights of individuals with disabilities. The ARC has a high level overview.

LEVEL THREE: ADVOCACY+ … HELPING YOUR SIBLING LIVE THEIR OWN INDEPENDENT AND CONTRIBUTING LIFE
At the upper end of the spectrum is really providing that extra level of support so that you are no longer talking just about security but you are there to help your sibling with developmental disabilities contribute in a meaningful way to society, maximize his or her potential, express their independence and self-determination. And these are all possible for any and every individual.

Okay where do you start?

1. Talk to your family (talk to your parents before they die and find out what are their hopes and dreams. Talk to your sibling with developmental disabilities and find out THEIR hopes and dreams. If they can’t tell you, spend some time with them and learn what they love and you must learn what puts them at risk. Talk to your other siblings and find out where they want to be on the involvement spectrum (okay, note to self: I have to do this with my sibs)
2. Gather information on the rights of individuals with developmental disabilities ( the DD Act, the National Disability Rights Network)
3. Work on your advocacy skills and speak the language (people first language )
4. Get connected to a community  (for example, Sibling Leadership Network, Siblings on FaceBook … Connect to me first and then we can get you connected, one by one, to others, join the ARC
5. Do something on a daily basis. Make this part of your daily routine. I don’t know it all, I have plenty to learn. I learn more every day. But the honest truth is that it took me 15 years to wake up to the fact that

 Being a sibling of an individual with developmental disabilities is a way of life – it is not a phase. It is a marathon, not a sprint. To run a marathon you need daily conditioning.

Yours in community,
Kate