Try This Tuesday: Showers of Independence

I love a theme song!

Let's just say that all goals are not created equal. We have goals for our children that are temporary, showy or that prove eventually to be less important than we thought they would be when we thought them up. Achieving as much independence with hygiene as possible is not one of the silly ones--it is safer to be able to do private things more privately, it is terrific for self-esteem and it makes life easier to engineer for everyone. Granted, as much independence as possible looks different for every person with a disability, but this is an area where efforts are seldom wasted.

I look at hygiene as sort of a tonesetter kind of goal--are we into finding a comfortable routine for our family or do we have a continuous improvement mindset? (Neither of which is right or wrong--or necessarily permanent, they are just different approaches.) Our family has moved between these two mindsets as life has evolved, and will continue to do so, I am sure.

To work on hygiene goals you can take one of two approaches. You can start from the bottom up, write a plan that begins at the beginning with Step 1: Gather supplies and ends with Step 37: Put on your pajamas. Or you can begin with the routine you have and tweak it constantly until you have ARRIVED. Which approach you choose depends on your child and your family and what you are trying to teach.

With bathing we took the tweaking approach. We started many years ago by just handing my daughter the washcloth and having her wash her face and grew things from there.

Many things needed tweaking as we went:
-We moved her from showering in the tub to the shower stall when we realized stepping over the side of the tub really scared her.
-We went from sitting nearby and handing her a towel to dry her face 1000 times/shower to hanging one where she can reach it.
-We tried one of those shower mirrors to see if it helped her get the soap out of her hair (it didn't so it's gone...)
-We moved from cuing, to asking what's next, to not being in the room.
-We still have some tweaking to do--we just recently marked the safe temperature range on the faucet so she can set the water temp. herself (She knows to test the water with her hand, but I still kept looking for something we could teach her that would apply anywhere--couldn't figure that out so resorted to marking the faucet... will be tweaking again when a new idea comes along.)

And the beat goes on...

My friends whose kids have different disabilities are also increasing independence in highly individualized ways--and tweaking things as they go. My one friend has been teaching her son who doesn't move independently to direct the process--and she has had to modulate his approach so he doesn't drive his caregivers away (think about what a great lesson this is--management training! He will know how to be a boss when he's done!)

The big question is usually quality control and my rule of thumb is that most things missed today can be caught in tomorrow's shower... sometimes we send her back (we have done this with others of our children over the years as well)...

The only big rule is once they are independent with something try as hard as you can not to take it back. In other words, unless there is an emergency (and how many shower emergencies are there really??) we don't go back in... ever. This has meant rinsing shampoo out of her hair in the kitchen sink--not convenient, but better than taking away earned independence.

The book I recommended two weeks ago, Steps to Independence, is a great help for breaking tasks into steps and teaching them. Another great resource is the Disability Solutions newsletter. It is no longer being produced, but their archive is available on line and every issue is pure gold! Check out Volume 6, issue 1 talks about transition to adulthood and has lots of good advice.

Try this Tuesday: About that IEP

Oh yes, it is that season again!!! Here are some tips I hope you find helpful as you prepare for your IEP meetings.

1. Organize your thoughts. Someone gave me this acronym and I use it as a checklist for myself: MAPS: Management needs, Academics, Physical needs, Social needs. I divide a big piece of paper in quarters and brainstorm each area, then organize what I come up with. Lots of folks have different systems, but that seems to work for me.

2. Organize your papers. It helps, trust me. Go see the possible placements, meet the people involved.

3. Know your rights. Your child is entitled to an education as a citizen—not IF he is toilet trained, or WHEN she becomes more independent. NOW. If they need support to be successful, they can have that support. Maintain perspective—it will cost your community far more if your child is not educated than it will cost to educate them. Hold your ground.

4. Practice phrasing everything in terms of needs. So instead of saying “we want Susie to have the limousine” say “Susie needs a vehicle roomy enough to…”

5. Deal with your feelings. Before the meeting. Vent to your friends, your mom, the people you work with and your advocate. New parents are dealing with many new feelings, seasoned parents are dealing with HISTORY—don’t go into the meeting full of pent-up emotions. You want to be able to think as clearly as possible. Some emotion makes everybody care—too much can derail the whole process.

6. Consider your negotiables and non-negotiables. Consider the possibility of many paths to the same outcome. I wanted an additional year of pre-school for my daughter—within limits I could be flexible about WHICH pre-school.

7. Consider the school’s point of view before your meeting. If you don’t know what their point of view is, ask them. You need to be able to address their concerns. And, if their ideas are vastly different from your views, you need time to get yourself into a “respectful, but not agreeing” mindset. That mindset is necessary for the team to function. A shocked yell of “WHAT the _______!!!!!” can really take a meeting down a wrong road…

8. Bring someone with you. Bring your spouse, a friend to take notes, your clergyperson (who can share how helpful your child is in Sunday school) or an advocate. It is so helpful to have another person who witnessed what went on. And they often add perspective to the meeting (make sure well ahead of the meeting that you and whoever is going with you are on the same page, of course.)

9. Plan several ways to explain your perspective. At one of my son’s meetings they wanted to discontinue all of my son’s accommodations because he wasn’t improving (he has a learning disability.) I was able to turn things around by pointing out that accommodations aren’t therapies, accommodations are like eyeglasses: glasses don’t fix people’s eyes, they just adjust eyesight, and people who wear them can’t function without them—ever…

10. Strategize. When there is some disagreement much of the team will be at the table geared up for a fight. They expect (and will goad you into) direct assaults, anger and negativity. If you can surprise them with a relentlessly positive perspective, humor, well placed questions,and relationship-building strategies amazing things can sometimes happen.

Good luck to us all! What else would anyone recommend?

Try this Tuesday: Book Recommendation

One of the most helpful books on my shelf is Steps to Independence: Teaching Everyday Skills to Children with Special Needs by Baker and Brightman.

It is a book full of step-by-step teaching information. It tells you how to break tasks down and how to avoid pitfalls. It is also full of tasks to teach. It has chapters on get ready skills, toilet training (I didn't have it back then), behavior management, independent living skills and more. It teaches you how to teach and how to evaluate. I admit that we don't always follow the process exactly (I really can't take that much process sometimes), but I never fail to find helpful information and ideas

While I find the book sort of frustrating sometimes because it is so process-y, this is of course why I need it. I find breaking things down hard to even think about sometimes and this book always gives me a place to start.

Beyond this it fully acknowledges the problem of creating kids who are totally cue-dependent and has you teaching the child to ask themselves "what comes next?" Teaching that thought process has been the biggest "step to independence" for us. It gets me out of the middle of the task once she has the steps. From taking showers to working on schoolwork, to playing games, to household chores, this book has been a HUGE help at our house.

For other book recommendations check out this post!

Unexpectedly Effective Advocacy Skills: Strategic Use of Information (Part 1)

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

Information and perception are always working—either for us or against us—with some attention and a few skills you can make it one of the most effective tools in your toolchest.

Take a moment and read this article.

What struck you about it?

I have a few impressions:
• It is from Wasilla—a few short months ago I had never even heard of Wasilla.
• It’s a transition program—sounds quite community-focused. Lots of good skills taught and some success.
• But: WHAT IS UP WITH THE DISCUSSION ABOUT THE GUY’S HAIR?????

This sounds like a good program. And I found this part of the article upsetting.

If this article were written about me I would be mortified (though I almost never forget to brush!) If it were written about my older two children the screaming at my house would never end—and neither would the harassment they would get from their friends. Yet, it is almost expected that these remarks will be written about our kids with disabilities.

Some will say “but it’s accurate.” And it is of course. Truth be told, most all of us have used the bathroom and performed some personal hygiene today (or if we haven’t, we certainly should have!) Yet, for most of us, our success or failure in this area won’t make the papers.

The reporter was looking for a story that illustrated that the program was supportive. The program (accidentally, I’m sure) gave her an easy way out by holding conversations that should have been private in front of her.

There were choices. It is not that they HAD to humiliate somebody in order to get their point across. The program probably also showed the reporter a client who was using much support and many repetitions to learn a job skill. Same story about needed support—dignity intact.

The reporter chose the more sensational angle.

See, the program showcased what they wanted to say, they just weren’t as vigilant about not showcasing what they did not want to say.

We want the world to look at people with disabilities and “Presume Competence” as writer Kathie Snow says. We can support this by Presenting Competence.

And if this can happen with experienced programs it can happen to any of us, and it often does.

The trouble is we look at where we are and what’s next, not at the bigger picture.

We're like sheep. Yes, sheep.

Sheep keep their heads down and munch their way along from the hunk of grass they are eating now to the next tasty hunk. They don’t look up to notice that they have strayed far from their path, to see the wolf, or to see that they are on the edge of a cliff until it’s too late.

Lucky for us we aren't sheep. We can minimize these occurrences with some planning.

Start by planning your underlying message. Set some parameters that don’t really change no matter what you are trying to achieve.

Having standards in place helps keep you from making as many unknowing blunders.(There will still be some and they will make great blog fodder, but minimize where you can!)

This could keep you from presenting your child as totally pitiful (in their hometown where you someday hope they will get a job) in order to make $$ for your parent group for example.

Now you may want to raise money for your group and your child can certainly be a part of it—this only makes you think about how.

Decide where you intend to go: My family believes that our kids—all of them—are valuable, they belong, and their weaknesses or struggles do not cancel out their strengths.

Equally important: Decide where you will not go: We will not embarrass each other. We all have dignity which we will defend. Details are shared thoughtfully. Privacy applies to all of us.

Compare your current situation with your planned message frequently to stay on track. Also check in with others. I run some of my blogposts by my friends or my kids to make sure I am on track and not humiliating anyone.

This doesn’t mean I can’t tell most stories—it just sets some parameters around how I tell them. For instance, I can mention that I am doing lots of laundry because of a stomach bug, but can’t detail exactly HOW the laundry got so dirty (somehow I think my readers are ok with this!)

I can showcase the funny, the frustrating, the wild, the weird, the quirky and the sloppy, good, bad, and downright icky—I just can’t make my kids look pitiful, stupid or less—ever.

Not even for a good cause.

Setting the internal parameters is the first step. Over the next couple of Tuesdays I will talk more about using information strategically to affect the situations you face. Have a lovely week!!!!

picture from here.

Try this Tuesday: Social Stories

This is a tool that we have used and used and used in our house to talk about anything and everything. A social story is a narrative that teaches expected behaviors in specified situations. It really is a powerful tool--for anyone. There is a lot of talk about these stories in the autism community, but their value goes beyond diagnosis.

The power of social stories is demonstrated everywhere--advertisers show you the skateboarder drinking a certain soft-drink. Now you know. That soft-drink is essential to being a cool skateboarder person. (And manufacturers would not invest in advertising at all if it didn't change behaviors!)

The power of social stories is, after all the reason that the disability community cares about the way people are treated in movies. We knew that the phrases used in Tropic Thunder would haunt our lives--and we were not wrong! And I know just how I will act when my queendom comes through because I have watched The Princess Diaries--all of them--several (thousand) times.

When we are trying to introduce a concept to my daughter we have found Social Stories incredibly valuable.

Sometimes I find the stories I need at a bookstore or at the library. The Berenstain Bears books are ALL social stories. They teach kids what to expect at the doctors, or dentist or at school. Many other books or movies will show behaviors we are interested in. There is great value in this because my daughter loves books and movies so the lessons offered there are very well received.

Sometimes though what we need isn't really available from other sources--so I make them.

I tried Social Stories out for the first time when my daughter was in 3rd grade. She was in chorus and right before the first concert they moved their rehearsals to the stage and my daughter flipped out. She would not go on the stage, she would not sing, she was a mess.

I sat with her and it turned out her biggest fear was that she was going to fall off the stage. The lights and noise in the cafetorium compounded this. I was wracking my brains for a way to build her some success. I decided to try a story.

My daughter and I sat at the computer and wrote a story about Singing in the Chorus. We made pages about all the things that would happen. We mentioned the kids that would be standing with her, the teacher, the accompanist, that if we stood with our friends we would not fall, that there would be a strange mix of lights and darkness, that there would be applause (and that meant good things.) We illustrated it with clipart.

We read it at bedtime and before school. She took it to school and she read it with one of her friends during the day (make sure the story will not embarrass your child if you decide to do this.) Her chorus teacher even took a few minutes out of his day to read it with her and then took her down to the stage to do a run-through.

The night of the concert we didn't really know what she was going to do, but she did it--no one who hadn't seen her meltdown 2 days before would ever have know that she had struggled at all.

We have written social stories over the years about appropriate bus behavior (couldn't find a book about not throwing your shoes on the bus for some reason!), about chores, about changing classes in school, becoming a teenager and more.

The stories can be simple or complex and can be totally individualized for your child's learning style, reading level, picture preferences and needs.

From toilet-training to being in a wedding, social stories are a great tool--try it out!

Picture from here.

Interview with Kathy Z.: Transition

My friend Kathy Z. has a 21-year-old son with Asperger’s syndrome and she has dedicated much of the past several years navigating through the thorny process of transition. She has agreed to share some of what she has learned with my blog—perhaps other people will find information here that will help them on their own journey.

This information is great for people whose kids are near transition age, but it is also good information for people with small children--while the details will change before your child is this age, a 'big picture' view of your child will help inform the decisions you make everyday. This shouldn't overwhelm you, just give some direction to your thinking.

So, where do we begin?

A lot of the preparation for transition from high school to the world of adults with disabilities begins years before the actual transition occurs, somewhere between the ages of 18 and 21. Start by asking yourself: what happens when the school bus doesn’t stop anymore? We need to approach transition from two directions: work done in collaboration with the school, and work done by the family at home.

The work of fostering independence begins at home. Difficult as it may be, picture your kid as an adult, and try to envision where she will be living and what she’ll be doing as an adult. A lot of kids expect life to go on the way it has without any real expectation of what might come next or that there might be choices. It is really important to teach our kids “visioning,” that is, picturing themselves in different scenarios. In many respects, this is no different from the things we do for our “typical” children.

• Talk to your child about what they want to do when they grow up.
• Ask your kid what type of place they want to live in. When you visit someone who lives in an apartment talk about what it would be like to live there—the same with other types of places.
• Talk about what kind of home life they would want and who they would want to live with.
• In your travels through the community, point out people at work and ask your child if they would like that kind of job, or something similar.
• Pay a lot of attention to your child’s interests and strengths—individualize!!!!! Explore any career opportunities those interests may feed into.
• Encourage your child to become part of the community and foster a sense of responsibility. Look for volunteer opportunities.
• Remember that almost no one starts out with their ideal life: we all experience Plan A, Plan B, and “when all else fails”! Teach your child to work towards their goals on a step-by-step basis.

Ask your child what their goals are: in most instances you’ll find that they are no different than anyone else’s: a home, a family, and a “good job that pays reasonable money” as my son succinctly put it.

Many people who work with our kids limit their own vision to entry-level jobs where they expect our children to stay forever. Your child may have a progression of ideas or may want to change jobs at some point in their lives—you can teach your kids to look beyond and ahead. Our kids with disabilities often get few opportunities for dreaming and may have difficulty with the concept of time. They need practice.

Show them as many options as possible and get them in the habit of imagining changes. Their life will change anyway as they get older and their families get older—it’s inevitable. Like everyone else, they need the opportunity to THINK about it.

What other skills are important?

Foster independence as much as possible: teach them the life skills they will need to be as independent as they can when they become adults.

Among life skills to consider are:

• Self care and hygiene
• Social skills
• Relationship skills (for many types of relationships)
• Self-advocacy
• Problem solving
• Organization and schedules
• Budgeting/finances
• Home maintenance

What else do we need to consider?

• When your child is a teenager you need to be sure that your child is qualified for services through your region’s Developmental Disabilities Services Organization (in NY, called the DDSO, handily enough)—this should happen while your child is still in school. Qualifying (at least in NY) gives you access to family training, service coordination (which gets you help with all aspects of your child’s life!) and Medicaid reimbursement.
• Investigate agencies also, find out about their rules, restrictions and options and other possibilities and funding streams. You want to be sensitive to system-driven or consumer-driven philosophies and other possible agendas. For example, some people like a religious connection and some people do not.
• You also want to look into SSI, guardianship or its alternatives, and trusts.
• It is important to note that adults with disabilities are not entitled to services the way children are entitled to an education. Qualifying will probably REQUIRE negative documentation. So for this, you will put away all of the strength-based work you have done throughout your child’s life and use a deficit-based, needs-oriented approach. This is hard to stomach, but like any label, it is just a doorway to services.

Any other advice?

Transportation is the most important part of any plan! You can have the best job and interests in the world, but if your child can’t get from point A to point B it could all fall through.
OK, We have talked about what we need to do at home, what should we be collaborating with the school on?

The work done at home is more extensive and more difficult, but in the long run, the skills you teach and the services you put in place are well worth the effort.

Most people are familiar with the IEP process, and in many respects, this is the easier of the two approaches as you have the might of law and entitlement on your child’s side, and therefore support from school personnel. You begin early assuring that your kids’ education meets their needs and, thanks to IDEA, schools are required to begin planning for transition at age 14. Some things to consider:

• Don’t just think of this year’s goals, always include long-term goals.
• Put things that you think might be helpful in your child’s IEP.
• Investigate and consider alternative programming and schools. One size does NOT fit all.
• Enlist the help of school personnel to brainstorm vocational opportunities. As your child comes closer to graduation, ask for a vocational assessment and request work/study opportunities.
• It is also important to remember that your child does not have to graduate in 4 years so you have time for vocational work, etc. By law, schools are responsible for your child’s education until graduation or age 21.
• Work with school personnel to foster independence as much as possible.

[Note from Terri: It really is never too late to begin these things. Anything you gain today that you didn’t have yesterday is progress. And, even if these things aren’t all checked off at age 21, it is ok—people learn and mature throughout their lives and so will your child. Do you actually know ANY adult alive who had it all together when they were 21?

It is also important to realize that there are lives and choices for people who cannot make any of these gains. The amount of independence a person has with these and other skills determines the supports they need to have in place, NOT the quality of their lives—and don’t let anyone tell you otherwise!]

Back to Kathy:

What else?

Network!!!! Talk to people—officially and unofficially. Pick the brains of anyone and everyone. Brainstorm and ask lots of questions. You are looking for ideas, connections and support.

Strategize about what to ask and who to ask for ideas. People you may want to network with are:
• School personnel
• Agency leaders
• Community leaders
• Friends
• Family
• Legislators
• List-servs and on-line communities
• Your co-workers (your friends’ co-workers, too)

This all seems so confusing—so multi-focal all at once.

It can become overwhelming. So start early and don’t do it all at once. You do need to have both a big picture concept and small steps. I find a visual organizer like mind-mapping or fish-bones very helpful for visioning and for problem-solving. When you have the whole picture in front of you, prioritize steps and start taking steps.

Unexpectedly Effective Advocacy #3: Yes and And

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well…



Last time I told you to channel Colombo, today I want you to channel Glinda the Good Witch.

But don’t worry, I am not going to ask all of you to float around in bubbles and you will never have to say, “And Toto too,” in that Glinda way! This is a real advocacy skill for use with real problems—even big, difficult, snarly problems.

Let’s face it. When we go to our meetings, whether we are working on an IEP, a job idea, legislation we would like to see, meetings with our school board, etc there will be people who have ideas about what will work for us or our child that are just wrong. We want to scream “NO!!!” at the top of our lungs. We want to follow everything we hear them say with “BUT, what about….?” And really, who could blame us?

Our ‘NO’ can be a very powerful tool and putting up with the unacceptable is, well….unacceptable.

‘No’ can be the perfect word in some situations and, sometimes, taking another tack can be even more useful.

Here’s the deal:

‘No’ is a powerful word, and it is the word that EVERYONE hates to hear. Using it sets up an argument which immediately makes the other person in your conversation dig deeper into their own position—against you. This is true whether you are talking to 2 year olds or directors of special ed.

‘But’ is a negator. It is used to say that everything that was said before the ‘but’ is not actually true. (Think about that phrase, “I love you, but….” See, it IS a negator!) When we say ‘but’ we say that everything you said before, or that they said before, isn’t so—again setting up an argument. (However and yet are also negators, so don’t even try it!)

Now I can be a little feisty, and I actually enjoy a good argument now and again and there are also times when arguments really don’t work for me. First of all, the other side usually becomes more dug-in when we argue… and some people actually go into meetings with me PREPARED to argue! (Can you believe it??) Second, while I am happy to argue to advance my position, arguing to lose ground or even to stay in the same place forever does not work for me—I have neither the time nor the energy!

Channel ever-positive Glinda: Use ‘Yes’ and ‘And’ instead and watch what happens.

Imagine that you are at a school board meeting and the sports boosters are proposing expensive updates to the football field—while special education languishes.

It isn’t hard to predict the fireworks that could so easily happen and could go on for the next several months.

On the other hand, what would happen if we went with a Yes/And approach?

If a dad stood up and said, “YES, I agree, the updates to the football field are long overdue. We have kids who need football scholarships to build their futures and the district should support them in this—plus we are all big fans! AND we need to bump up the special education program because our kids with disabilities need specific services to build their futures and we need to support them too!

What has happened here? Several things:
• You have surprised folks who expected a fight.
• You have suddenly made allies of the second-most involved parents in your school (and who knows when they might be allies for you?)
• You have gotten your board thinking about possibilities instead of all-or-nothing choices. They may even come up with a way to do both, but even if they can't they are more likely to do the right thing and without blaming “those kids” and “those parents” for their decisions.

This works in a myriad of places.

When your child’s teacher says we are worried about little Doogie’s _______________ (fill in your own issue) so we are going to implement ____________________________ (fill in your own ridiculous plan that could never possibly work) so that his independent skills will improve.

Say, “YES! We are also concerned about Doogies’ ____________ and we agree that independent skills are the goal. AND we think that implementing _________________ will give him the supports to do just that."

The whole dynamic can change sometimes with these two little words AND to think “You had the answer inside of you the whole time.” Thank you, Glinda!

Picture here.