Monday, June 24, 2013

Abolishing (the word) “Siblings”


Picture a blank index card in my left hand and a red felt marker in my right. I’m writing a word on the card: 
s-i-b-l-i-n-g.
Sibling. We’ll do something with this card at the end of the post, but for now, let it sit in your imagination near the bottom of your screen.

A line from Diana Kimpton’s book, A Special Child in the Family: Living with your sick or disabled child, jumped out at me last week. It got me to thinking hard about brothers and sisters. Listen to this:

Next to yourselves, the people who will most be affected by your child’s special needs are his brothers and sisters or, as professional jargon calls them, his siblings.” (loc 1306)
 
Really, siblings??? Just because a child has disabilities, now the relationship with his brothers and sisters is reduced to “siblings?” Where outside the world of disabilities are brothers and sisters demoted to this unnatural role? Of all places, where kids in a family already have multiple strikes against them because of special needs, shouldn’t we be encouraging thriving relationships? Professionals, are you listening?

To be fair, “siblings” probably started out as shorthand for “brothers and/or sisters” in much the same way that “parents” means “mother and/or father.” It’s quick to say and doesn’t require an explanation.

But it also reduces unique and potentially vital relationships into detached roles.

I thought back to all the times my grandparents took us through cemeteries looking for undiscovered relatives. Over and over, we read headstones bearing the sentiment of “loving mother, daughter, sister…” or “loving father, son, brother…” But I don’t recall ever seeing the word “sibling” used to describe the honored person. Not once.

Why? Because we value relationships. These may be warm and loving and vibrant, fiery and filled with discord, or a combination of these, but relationships are never neutral. Relationship means that someone matters to us, even if to make us angry or jealous.

What do you think of when you hear the word “brother?”

·         Wrestling partner

·         Secret spy or pirate (sometimes working together, sometimes enemies)

·         Teacher of whistling and spitting

·         Tickler-until-you-beg-for-mercy (for younger brothers, substitute digger-of-chin-into-shoulder)

·         Helper with chores involving ladders or tractors

·         Above all, relationship.

When you hear the word “sister,” what comes to mind? I don’t have a sister myself, so these images, based the relationships of sisters I know, are what I picture:

·         Clothes and nail polish stealer

·         Eavesdropper and diary reader

·         Midnight confidante

·         Recipe swapper

·         Lifelong friend

·         Again, relationship.

Contrast these rich, evocative words of “brother” and “sister” with the word “sibling.” What comes to your mind when you hear the term “sibling?”

·         “Sibling rivalry”

·         Lifetime responsibility, caretaking, and guardianship

·         Guilt

·         Disconnect

·         A role.

Where is the relationship in that?

When we reduce brothers and sisters to the dissociated role of “sibling,” we impose that same isolation onto our child with disabilities. Brothers and sisters have relationships with their brothers and sisters; siblings carry out a role with another sibling. There is no connection. The potential for emotional damage here is very real.

When my daughters were small, they epitomized the “sister” relationship. Disability wasn’t part of their frame of reference. They swatted foam at each other in the tub, tackled each other on the floor (or, more accurately, one toppled over on top of the other), curled together on the couch to read picture books. They got the giggles at bedtime and bit each other when they were angry. They had their little arguments in the back seat of the van…”Mommy, make her stop looking at me!” They saw beauty in one another (“Why wouldn’t someone marry her? She’s such a nice person”). 
 
Now they are teenagers dealing with teen attitudes. The sister relationship my daughters once shared has digressed into more of a sibling “role.” Disconnect sits in the room like the proverbial elephant no one wants to bring to attention. That elephant causes them each tears and stress when no one is looking. I confess it brings me to tears as well.

I don’t want my girls to be “siblings” anymore. I want them to be sisters. I’m not sure how to make that happen, but abolishing the word “sibling” seems like a logical place to start. If anyone asks if my daughter with Rett syndrome has a “sibling,” I’ll tell them that she has a SISTER. I need to grab tightly to that word and encourage both my girls to embrace it as well.

Remember the index card with the word “sibling” printed on it? Let’s walk over to the shredder now, and drop the card into the slot. You can hear the motor and rollers and blades activating, right? The “sibling” card is now a bazillion little bits and I choose to not include it in my vocabulary anymore. How about you?

 

Monday, June 10, 2013

What Would YOU Like to Know About SSI?


So many important and unfamiliar events happen when our kids with disabilities turn 18 years old! One of these that confuses many of us, present company included, is the application for SSI, Supplemental Security Insurance. It's uncharted territory for most of us.

Wouldn't it be great if we had a guide to sort out some of our many questions? Thankfully, Molly Clarke of Social Security Disability Help has agreed to provide answers to some commonly asked questions that leave us scratching our heads.

What questions would you like Molly to address in a post? I'm collecting your questions in the Comments section below to pass along for her expert response. Please add your questions to the Comment section to let her know what burning questions YOU have!

Then, stay tuned for Molly's answers...they are sure to be a big help!

Photo credit:  The Survival Woman at Flickr Creative Commons

Monday, June 3, 2013

Special Needs Children and Social Security Disability Benefits

Photo courtesy of SalFalko, Creative Commons
Do you have questions about whether or not your child might be eligible for Social Security Disability benefits? Many families do. Today we have an excellent guest post by Molly Clarke of Social Security Disability Help written with your questions in mind. Please give Molly a big welcome!


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Children labeled as having “special needs” can vary dramatically when it comes to their symptoms and limitations. Some children have mild learning impairments while others have terminal illnesses. No matter the severity of your child’s condition, a disability or health condition is certain to impact the entire family.

 

Parents of children with special needs often dedicate a significant amount of time and effort to keeping their child happy and healthy. In order to fully support a child with special needs, parents may find that they need to reduce their professional workload or even leave work all together.  The resulting loss of income and lack of medical insurance can cause serious financial distress.

 

If your child has a serious health condition or disability he or she may qualify for Social Security Disability (SSD) benefits. As a parent or guardian, you can use these payments to provide and care for your child’s individual needs.

 

Supplemental Security Income

The Social Security Administration (SSA) provides disability benefits through two programs. The first program—SocialSecurity Disability Insurance (SSDI)—is commonly associated with disabled adults. This is because eligibility for SSDI is determined by the amount of taxes an individual has paid into the system. For obvious reasons, children don’t typically qualify for this type of assistance.

 

The second disability benefit program is called Supplemental Security Income (SSI). SSI offers financial assistance to disabled and elderly individuals who have very little income.This program does not have age or work-related requirements in order to qualify. Instead, applicants cannot exceed certain financial limits set forth by the SSA.

 

In the case of a child, a portion of the parent or guardian’s finances will be taken into consideration. This is called “deeming”. The SSA uses deeming when a child is under the age of 18, is unmarried, and lives at home with his or her parents—who aren’t SSI recipients. The SSA will no longer deem the parents’ income if one or more of these factors changes.

 

Parents’ earned income, unearned income, and financial resources will all be deemed. If the child lives with a step-parent or adoptive parent, their income will count as well. Listed below are the sources of income that are not included in the deeming process:

 

·        Welfare or Public Income Maintenance (Including Temporary Assistance to Needy Families and VA Pension for veterans.

·         Foster care payments

·         Food Stamps

·         Disaster assistance

·         Tax refunds on real property

·         Home grown produce (used for personal consumption)

 

In addition to the previously mentioned types of income, the SSA will also make allocations for living expenses. In 2013, the allocation for a non-disabled child who does not earn any income is $356 per month. This means that for each ineligible child that lives in the same household, the SSA will deduct $356 from a parent’s deemed income.

 

The SSA also includes a parental living allowance. The amount for one parent is $710 per month. The amount for two parents is $1,066 per month. This allowance will also be subtracted from the amount of income deemed to a disabled child. It is important to note that this amount will not be subtracted for parents who already receive public assistance.

 

Once your child turns 18, deeming will stop and his or her own income will be used to determine eligibility for SSI.

 

Definition of Disability

In addition to meeting the technical and financial requirements mentioned above, your child must also meet the SSA’s definition of disability to qualify for SSD benefits. This includes meeting the following criteria:

 

·         Your child cannot be employed at any job that is considered to be substantial work.

·         Your child has a mental or physical condition that significantly limits his or her ability to function and complete typical daily activities.

·         Your child’s condition has lasted—or is expected to last—at least one year or otherwise result in death.

 

Blue Book and Compassionate Allowance Listings

 

While the SSA requires that children meet their basic definition of disability, they also require that your child’s condition match an impairment listing within the blue book. The blue book is the SSA’s official manual of disabling conditions and symptoms. It is important to remember that the SSA has separate listings for children and adults. Access specific listings and medical criteria, here: http://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm

 

The SSA recognizes that, due to the severity of some conditions, applicants cannot be expected to wait the standard processing times to receive disability benefits. For this reason, they began the Compassionate Allowances (CAL) program. The CAL program allows individuals with severely debilitating or terminal illnesses to qualify for benefits in as little as ten days. Please note that you do not have to fill out additional paperwork to qualify for CAL processing. The SSA will evaluate your child’s claim to determine whether or not he or she qualifies and will expedite your claim accordingly.  You can access a list of CAL conditions, here: http://www.disability-benefits-help.org/compassionate-allowances.

 

Social Security Disability Application Process

The SSD application process is slightly different for a children and adults.  As the parent or guardian, you will be required to complete two forms as part of the initial application. These forms include the “Application for Supplemental Security Income” and the “Child Disability Report”.  Currently, only the Child Disability Report can be completed online. You will have to schedule an appointment with your local Social Security office to complete the SSI application.

 

Before beginning the application process, it is vital that you collect the necessary medical records and documentation. The SSA will evaluate this documentation to determine the severity of your child’s condition. Medical documentation should include records of your child’s diagnosis, lab results, summaries of treatments, and any other relevant medical evidence. You should also include official statements from teachers, coaches, and physicians that interact with your child on a daily basis and can attest to his or her limitations.  You should also have access tofinancial statements when you begin the application procedures.

 

It is important that you understand that the application for SSD benefits will not be easy. The SSA processes many new applications each day and unfortunately rejects a good amount of them. It is important that you are persistent—particularly if your child’s initial application is denied. You have the right to appeal this decision.

 

Once you are awarded benefits you will be able to focus on the well-being of your child rather than your own financial distress.

 

For more information about SSD benefits, visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.

 
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Please also take a look at the Social Security Disability Help website, which is an amazing resource. Be sure to bookmark it for the future even if your child is not currently eligible for Social Security disability benefits. When the time comes for you to apply on your child's behalf, you'll want this information handy!
 

Thursday, May 23, 2013

AAC and Rett Syndome

Those of you who may not yet know of Carole Zangari's AMAZING blog, PrAACtical AAC, you are in for a fantastic treat. For any parent or teacher supporting a non-verbal child, Carole's blog is such a wealth of information!!! She has so much information there, it will take months for you to go through all of it.

Today, PrAACtical AAC is featuring an excellent guest post by Dr. Theresa Bartalotta. In this post, Dr. Bartalotta gives a concise, helpful overview of Rett syndrome and ways to support communication in children and adults with the disorder.

I appreciate how Dr. Bartalotta addresses the challenges our kids with Rett face as they relate to communication:
  • physical limitations
  • response time
  • non-standard communications that can become highly meaningful
She also talks about particular AAC interventions that can be useful, including techniques, partner training, and low- and high-tech solutions that have been shown to be successful with some kids with Rett syndrome.

Those of you who know me well know that I take exception to the description of the Rett syndrome that assumes "most individuals are severely cognitively challenged" because we simply don't possess the tools to measure that. If you can't prove it, you can't presume it, right? Better to give the benefit of the doubt and provide rich opportunities, letting kids bloom to the greatest of their potential. That's my soapbox and I'm not stepping off, sorry.

For an introductory article on AAC and Rett syndrome, Dr. Bartalotta covers a lot of ground! If your child has Rett syndrome, it's worth passing on to your child's speech therapist.

Then, once you do that, go back and browse the PrAACtical AAC site. You'll be glad you did! Seriously, go check it out!




Monday, April 22, 2013

Resilience as a Way of Life


If living with disability teaches a family anything, it teaches us resilience. We can handle more than we think we can.
 
Photo by Healingdream
 
I‘ve been thinking a lot about family resilience lately. Maybe that’s because our family is getting a chance to flex those muscles of resiliency hard. It was good catharsis for me to write down all the things we’re dealing with right now, but I erased them because my words sounded whiney. The point is, we’re being pulled from many sides.


All of us are being pulled. Much of the time.


There is no point in letting it get us down. We are stronger than we think.


This week I took part in a support group for parents of kids suffering with a particular illness. It was lovely to meet other parents and hear their stories. We were all at different places in our journeys, but the current that carried the words around our table was one of resilience. These families tackled the challenges and kept their eyes fixed on the goal line. That’s something parents learn to do, and the more practice we have at doing this, the more familiar and comfortable it becomes.


I won’t say that it becomes easier, because that isn’t always true. Sometimes resilience is a difficult response that takes focused effort. But with practice, it comes more naturally.


I hear similar stories of stress and resilient responses in my disabilities circles. Life dishes out messy circumstances sometimes, ones that can get us down. It’s okay to cry for a time, especially early in a diagnosis when our hurt is raw, but then we need to pull on our rubber boots and wade through the muck. And we do, one step right after another. Eventually, we get out of the sloppy mud.


There is a lot we can do to draw strength during stressful times.

·         We pray. Hard. Faith often grows when we are stressed.

·         We make time to connect with our spouses. It might just be brushing our teeth together as we switch shifts, but we savor that time.

·         We take solace in our routine chores. After all, everyone needs clean clothes even if one of the kids is in the hospital. And the goats still need to be fed…just ask them.

·         We help someone else going through a rough time. The strength you can draw from this one never fails to amaze me, but I see it often. Parents who are working hard to keep their own brood in a sane place will offer encouragement or advice. That very act gives them energy to keep going. It is true for me.

·         We let go of the optional. We may have to post to our blogs less often (do you feel an apology hidden there?). We may have to back out of the carpool for a time or let someone else teach Sunday School.

·         Pet peeves are optional. Learn to let them go or see them differently. Kitty prints in the dust on the mantel normally send me to grab the duster. Right now, during a time that demands resilience, I look at them as evidence that the cat is alive. This makes them a good sign, right?

·         If you can’t set aside time to enjoy your hobbies (do I hear you belly laughing about now?), see if there is some way to build them into your temporary routine. I love to tat (that Victorian art of making lace with shuttles) and find it’s something I can do in the car while my husband drives us to the hospital. Well, that was before I injured my hand, but I digress… Above all, try to find things within your busyness that make you smile. Or even laugh.
·         We ask for help. If anyone knows how to do this, please share. I’m lousy at this one, but have heard it helps.

You are an expert at resilience. Would you share with us what helps you stay strong when the pressure is on?

Monday, February 11, 2013

PowerPoint Series Up and Running (Again)

If you haven't checked out the series here on using PowerPoint for meeting Assistive Technology needs, I encourage you to check it out. All the posts in the topic can be found through the "PPTs for AT" tab in the center of the top bar. You'll find so much information that your head will spin.

Thank you!!!


Thanks so much to several readers who pointed out that links to the PowerPoint as Assistive Technology series had broken. Sweat is flying off my brow as I get these links corrected. You should be able to access all the samples, templates, and handouts now at Google Docs in my PPT folder. Thanks so much for your patience with this transition!!

So far, so good, but I appreciate your help...


I've tested all the links and they worked fine at the time. But if you find any broken ones, please, pretty please let me know of any you come across that need repairing and I'll get right on that.

Coming up next, PPT communication on the Kindle Fire


In addition to my flurry of activity trying to update the links for you, I am also in the process of working out a communication PPT for the Kindle File (Shhhh, don't tell my daughter, as it's a surprise for her birthday next week). There is a lot the Kindle Fire does that she will enjoy...movies, audio and print books, YouTube. The Fire doesn't have many options for communication apps, though...



...and none of them appear to be ideal for access by eye pointing. For one, none appear at first glance to have customizable spacing between choices. For another, any that are built with a button format are symbol-based rather than words. We plan for the Fire to be a quick, on-the-go back-up tool, so what I can create in PPT should be just fine for those immediate messages she wants to share.

I'll keep you posted!

Wednesday, December 12, 2012

Two Choices Do NOT Equal a 50-50 Chance


“Whoa!” you say. “Everyone knows that you have a 50-50 chance with two choices.  What planet is this crazy lady from? ”

You are not alone in this thinking.  I hear over and over that we have to give MANY choices per question…and have gotten caught up thinking this way myself in the past. We think many choices will prove our kids aren’t simply guessing. When our kids deal with motor impairments, though, too many choices can be an access nightmare. What to do, what to do?

The fact is, with testing, selecting from two choices can give statistically irrefutable results showing mastery of information. Let’s look at how this can be…

First let’s look at what makes a 50-50 chance

We’ll start by backing up to a situation where two choices DO have a 50-50 chance of being correct. Take a coin and predict whether it will land with heads or tails up. Now toss it one time and let it land. At this moment, you DO have a 50-50 chance that it will show heads. Or tails. Agreed?

You could repeat this same random coin toss ten times and about five of those tosses would be heads.

Try it a hundred times and you should get about 50 tosses coming up tails.

Why is this so? Why do half the tosses give heads and half give tails?

Because the only factor at play is luck. All the other factors are equal for each side of the coin on every toss…the balance of the coin, the number of rotations in a flip, the speed of travel... These weigh equally on the outcome. They won’t change the probability of a guess based on luck.

If a student is genuinely guessing at answers, they are strictly shooting based on luck. You could expect about the same results as the coin toss. They would score about 50% correct on the answers of a true/false test, a sorts assessment with two columns, or another binary choice test.

When odds are no longer random

When all the factors to support student success are in place, luck doesn’t particularly influence the outcome. If the child knows the answer, has the appropriate access methods, and is caught on a day when health and sensory issues are met, then a correct answer likely has nothing to do with luck.

The factors at play—knowledge, access, and health issues—change the game completely. Testing is unrelated to the coin toss, even when there are only two possible responses.

When a child is able to score 5 correct responses on a 5-point true/false test, the statistical likelihood that this was achieved by pure guessing is about 3%.

But 3% still leaves a tiny possibility the child was guessing. Three chances in 100. How do we reduce that so we can know beyond a doubt that the child was demonstrating knowledge rather than luck?

It doesn’t take very many corrects to get pretty strong data

Five isn’t many questions for a test, but it IS a good number for a child whose ability to attend to a task is impaired by issues of access, attention, health, or sensory processing. If you can cycle through a longer test in short 5-question chunks, you can get some highly valid information in relatively short time.

5/5 correct can only be achieved by guessing 3% of the time, as we said earlier.

5/5 done twice (totaling 10/10) gives <.1% chance--less than 1 in 1000--of guessing as the means for achieving the score. That’s good enough for me (side note: this would not be adequate if we are talking about skills needed to fly a commercial airliner or perform neurosurgery, but for academic skills for most kids, it works).

5/5 done three times (or 15/15 total) only gives a .00003% chance of guessing…and that is statistically improbable. Most definitely.

The great news is that a child can still demonstrate high levels of understanding even if they can’t get a perfect score every time.

Let‘s say they can manage to get 4/5 correct on a group of True/False test questions. There is a 16% margin for guessing, which is too high to put our money on.

If they can get 4/5 again on a second try (a total of 8/10), the likelihood of arriving at this score by guessing drops to 4%. Still a little high.

The third time they score 4/5 (raising the total to 12/15), the probability of guessing drops to 1%. That is 1 in 100, so getting smaller!

The fourth time they manage 4/5 (or 16/20 now), the likelihood they are guessing drops to only .4%, or 4 in 1000. For basic academics, this satisfies my confidence they are exercising skill rather than luck.

Great news for our kids with motor impairments

This shows that kids with severe motor impairments who can only select between two responses really can demonstrate to us that their answers are intentional.

Obviously, having the motor control to indicate an answer from THREE choices is terrific for giving strong proof that your answers are not guesses. It lets you get to that point faster.

For example, in a 5-question quiz where each question has THREE responses, a perfect score of 5/5 only has a .004% chance of being achieved by guessing. Everyone can agree that this score is pretty unlikely to result from luck!

But when motor skills dictate that TWO choices are best, our kids can still demonstrate their proficiency without the fear of that guessing has influenced their scores. It just takes longer.

Also, it takes longer if they can’t achieve a perfect score every time. But it can be done. That, friends, takes a huge burden of pressure off both the student and his teacher!

A tool to simplify this statistical computation

Back in my college statistics class, we had to crunch the numbers to rule out the probability of guessing. On scratch paper. By hand. It was grueling!

Now, we have a fantastic FREE tool online that can do this for us. In  a split-second!
www.stattrek.com/online-calculator/binomial.aspx
It’s so easy to use!

1.       On the first line, type in the "chance" of getting one problem correct, expressed as a decimal. In a 2-choice problem, the chance is .5. In a 3-choice problem, the chance is .33. For a problem with 4 choices, the chance is .25. Kids with motor issues should not be given more than 4 selections per question, so I won’t go farther.

2.       On the second line, tell how many questions on the test.

3.       On the third line, write how many corrects the student scored.

4.       The fourth line will tell you the probability that the student could have arrived at their score by guessing. The tinier the number, the less chance there is that the student guessed.

Hidden messages:  guessing and intentional misses

Scores that are not perfect (or close to perfect) hide important information for us to uncover.

Those that fall around the 50% chance of being achieved simply by luck were probably the result of guessing. So why is the student guessing? Do they not care? That’s OFTEN the case! Do they not understand? Very possible, but the fact that they haven’t established any kind of generalization, even an incorrect one, means they have not caught ANY of your instruction.

Scores that show a statistical probability that answers are actual errors (say, 0-1/10) rather than guessing are also strongly telling. When you type the figures into Stattrek.com, you will see that the likelihood of guessing only errors is a slim as guessing only corrects. There is a message in a page full of errors. Does the student understand the teaching wrongly, applying the concepts backward? It’s very possible. Is the student trying to tell you she is bored? Hmmm…we need to pay attention to this.

Are you feeling more confident now in providing tests that ask students to select from just two choices? They can be devised to give you very accurate feedback about the child’s understanding.

The key is in the number of repetitions, but even that can be surprisingly small. Once you start crunching numbers, you can see that tests don’t need to be pages and pages of questions. Go small, add more if needed, and check back with Stattrek.com often to see if you’ve eliminated the probability of guessing. You saw from our examples how a perfect score on only 15 true/false questions is statistically irrefutable as being skill rather than luck!

Let me know if you still think I’m a crazy lady from another planet or if this makes sense. Just leave a comment in the box below…I read them all!

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