Tag: Down syndrome

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Travels of a Posterior Walker

The following includes memories from six moms of children with Down syndrome, including myself. 

You might describe me as hard and cold. A slave driver even. I’m built of heavy metal. I can withstand the biggest blow a toddler can dish out. Parents begrudgingly bring me into their home. They really don’t want me there. I’m clunky and take up a lot of space. But more important I remind them of their child’s delay.

Still, I end up finding a place in their hearts and collective memories. That’s because I help their child accomplish one of the most visible and monumental developmental milestones of childhood: WALKING.

You’ve been there when parents gloat about their 9-month-old just standing up one day and walking. Yeah, I know. I want to run them over for you. You know what I want to gloat about? The real warriors. The ones who have to work ten times harder than any other kid on the block. The one who cries through therapy every week, but keeps on keeping on. These kids are hustling with me for months, just to prove they have what it takes. They can walk the walk!

Easter egg hunt with Troy and his twin (see the foam on the front of me)

My first warrior was Troy. A military brat, who was lucky enough to come by me through the windfalls of Tricare Military Insurance. Did you know not every kid like Troy just gets to hang with me for free? I’m usually an out-of-pocket expensive; a frivolity, I’m told. Hmph!

Anyway, this kid is a real bruiser, and stubborn as a mule. He knows what he wants and how to get it. I can respect a kid for that. Except for the fact that what the kid wants is speed and adventure and excitement. A little too much speed and adventure and excitement for me. And I’m a pretty fast, adventurous, exciting guy.

It got so bad Troy’s dad (a tough military dude) had to put foam strips all over me, because the kid kept ramming into things. Troy’s mom said I’d destroy her cabinets, but couldn’t she see it wasn’t me that was doing the damage. Troy has a twin brother, so that meant double trouble. Two kids seeing how fast they could race me down the drive way. The only bright side of this family was their travels. I left Nebraska for vacays in Minnesota, Michigan, and Florida.

I can’t tell you how lucky I felt to be passed along to my second warrior, Trevyn. Troy’s mom thought it wasn’t fair that other kids had to pay to play, so she told Trevyn’s mom to pass me along to any kid that needed me after Trevyn. And so the chain of kindness and fun began. 

Cool Cat, Trevyn

Trevyn is one cool dude, and so laid back. Mostly I stood in a corner, just chillin’. Of course, this worried Trevyn’s mom and two older sisters. They cajoled and prodded Trevyn to use me. But Trevyn and I were like “no man, let’s just be cool. Let’s just relax!” Trevyn’s mom said he must be scared of me. His sisters and even his big dad came over and pretended to walk with me to show Trevyn I wasn’t scary. Trevyn and I just laughed. The best was when Trevyn’s therapists added a swing-type seat to convince him to use me. You know what he did? He sat down, picked his feet up and swung. I love that kid!

Eddy walking at school with his mom

Eddy was my biggest accomplishment thus far. This sweet little guy is a true warrior. Even through health problems and surgeries, Eddy always tries. I also got to go to school for the first time. I’m not bragging or anything, but Eddy’s mom says he wouldn’t have been able to navigate his school without me. He took me to all his classroom centers (play doh was our favorite). We even went to the playground together; the other kids were so jealous.

When Eddy finally walked independently at 3 1/2-years-old I wanted to cry tears of joy, and would have if I had eyes.

I left a mark on the next household I visited…literally! Gavin was just as wild as Troy. It was almost two years ago, but it seems like just yesterday Team Gavin was racing for the Gold. Gavin’s house was the perfect racetrack. The main floor was laid out in a huge circle. Round and round we’d race, burning the midnight oil. Even good racers crash sometimes though. We hit walls, doors, cabinets. But Gavin and I knew we blew the rods out when we left an indelible, circular mark on the wood floors. His mom was not pleased.

The racing legend, Gavin
My favorite mall-rat, LJ

Can you believe I got double trouble again at my next stop?! I mean the likelihood of hanging with one set of twins (one with Down syndrome) is literally 14 in a million. When I was dropped off at LJ and Harper’s I thought I better start playing the lotto. But really, I already hit the jackpot with this family.

Nebraska winters are harsh, so LJ’s mom got the brilliant idea to take us to the mall so we could strut our stuff. LJ and I quickly became mall-rats, and our “Wednesday regulars” were amazed at LJ’s progress. Week after week they’d comment about how fast this cutie was getting as we window shopped.

I never knew love until my latest gig. After five arduous, testosterone-filled years, I finally got my girl!!! 

It’s been the summer of love with sweet Emilee and I. We’ve only been together for 3 months, but I think this one’s forever. At first she would scoot over to me and play with my handles, but now she shrieks with glee as she stands up and tries to walk. I can’t wait to see this sweetie take off!

My Sweet Emilee

I feel truly lucky to get the privilege to teach these amazing kids to walk. My advice to anyone that will listen is that kids with Down syndrome deserve your respect. They work so hard to be included, and be seen for who they are: more alike than different. 

Postscript: Thank you Kari, Jeanna, Tiffany, Kendra, and Stacy for sharing your sentimental and at times hilarious stories about your child with me. Although it seems that the delay in walking is fraught with worry for new parents, it also helped me realize that Troy really can do anything he puts his mind to. It’s been a joy knowing that the walker has been passed along to so many children, and made a small difference in their lives. 

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Inclusion for Individuals with Down Syndrome is Just a Click Away

Down syndrome comes with a lot of assumed can’ts and won’ts. But the world often misses the incredible way individuals with Down syndrome adapt. With the right supports, most things are possible.

Us with my 85-year-old Grandmother

Today, more than any time in history, a life of independence and self-determination is just a click away.

My 85-year-old grandmother laughs that her 4-year-old twin great-grandsons, one with Down syndrome, knows more about modern life than she does. And in a way, she’s right! Troy gets very limited screen time, but has still managed to master his Great-Grandma’s iPad. Technology is intuitive to all young people today; children with Down syndrome are no different.

I can envision Troy living on his own one day, driving to work on time, shopping, exercising, and loving life all with the help of modern assistive technology.

The future is here, and it’s revolutionizing how people with disabilities live

Many of you may have paused when I said “driving to work,” and rightly so. In reality, the likelihood of someone with Down syndrome earning their driver’s license is extremely low. I’ve read a handful of success stories, but by the time Troy’s old enough to learn to drive that number could be higher because of driverless car technology.

This is no longer the stuff of sci-fi movies and dreamers. Tesla recently released their mid-level, $35,000 driverless car, and Nissan promises a car with “autonomous drive technology” by 2020. Google’s second generation car doesn’t even have a steering wheel or brake pedal. Google says in order for people with disabilities to benefit from this type of technology, the car needs to be completely autonomous. Regulators and society in general will have to consider the ethics of this new technology, but that debate is already beginning and there’s no stopping progress.

Inclusion Through Innovation

If driverless cars seems too far-fetched for you, there’s a multitude of assistive technologies that you probably use every day that can help foster inclusion for individuals with Down syndrome. Everyone’s got a smartphone, and that alone has endless possibilities for supporting independence and inclusion.

Got a problem or an accommodation, there’s an app for that:

Alarm Clock

Voice to Text, Text to Voice

Sign Language, iSigns

Navigation

GPS technology

screen magnifiers

Word prediction

Social networking

Tracking Behavior

Organize Personal Tasks, iPrompt

Steve (left) lives independently with his roommate (right)

Disability advocate and Mom-extraordinaire, Ricky Sabia, says her son, Steve’s smartphone was a life line in high school and is now crucial to his independence. “I don’t know if I would have survived him taking public transportation in high school if I couldn’t track him on “Find My iPhone.” Believe it or not, the biggest tool Steve uses now is the alarm. He sets it to remind him of when he needs to leave, when he starts a break, comes back from a break, leaves for the metro—the alarm is for so much more than getting up in the morning,” Sabia explains.

A college student with Down syndrome wants to attend a general class, but can’t take notes. No problem, Google Glasses can record the teacher’s lecture. Grade school students with disabilities could wear the glasses to the zoo and get real time facts about the animals they see.

An iWatch could track a self-advocate’s calorie intake and heart rate, all while listening to music and calling a friend.

I love how all these technologies blur the line between assistive and general consumer technology. This is Universal Design for Learning at its finest. Read my post about UDL here. UDL means providing flexible technologies so that everyone can learn. Typical people use the technologies above every day, and may not even consider how they could help someone with an intellectual disability be better included. The possibilities are endless!

What technologies does your loved one with Down syndrome use to lead a more inclusive, independent life? Share below.

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Communication is Key to Self-Advocates’ Pursuit of Goals

This summer I started a “Self-Advocate Communications Workshop” in my local area, and I’ve been blown away by the progress of the teens and adults with Down syndrome.

Honestly, I didn’t have many expectations for the workshop. I just wanted our local self-advocates to better represent themselves and the organization that supports them (MVDSA).

But watching our group of self-advocates rehearse for their role at our 15th Annual Buddy Walk literally brought happy tears to my eyes. I know it sounds cheesy, but they are really starting to act like self-advocates by communicating their wants and needs to people outside their family. 

Our mantra for the workshop is “I Can!”

Many of our self-advocates started the workshop apprehensive to speak in front of strangers, to look someone in the eye, and tell others who they are and what they stand for. The “I Can!” mantra helped them put into words their goals for the Buddy Walk and life in general.

In our last workshop before the Buddy Walk our Theater Educator, Stephanie Radford (heavy on the “RAD”), brought in strangers to test the self-advocates’ new communications skills.

They’ve been working on:

  • conversational skills
  • non-verbal communication skills like eye contact and body language
  • improv skills
  • speech skills

The self-advocates have warmed up to us over the last three months, but we wondered how they would perform in front of complete strangers. We set up a practice advocacy table with games and brochures, like they’ll have at the real Buddy Walk.

Practice with strangers to prep for the Buddy Walk

The first interaction was a bit forced, but as the strangers started asking the self-advocates questions about their life everyone started smiling and having a good time. The self-advocates used what they’ve learned about eye contact and reciprocal conversations to engage these strangers they’ve never met. I was impressed! They know that people may have a harder time understanding them, but still they advocated for themselves and got the job done.

I can’t wait to see how they do September 16th at our Buddy Walk!

They’ll be the ambassadors of the Miami Valley Down Syndrome Association; running our advocacy table and introducing national, state, and local politicians to Buddy Walk attendees.

Self-Advocates with our volunteer actors
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Brother Urges Parents to Prepare Typical Siblings For the Future

“My sister helped shape the trajectory of my life!”

Phillip Clark adores his sister, Sarah.

“I was 4-years-old when she was born, and I knew she was different then. From a young age, I knew I would always protect her.”

Clark kept his promise. He even created a career path centered around Sarah and other individuals with disabilities.

Clark owns ENABLE Special Needs Planning, LLC, and works with families daily to get their financial, life, resource, and legal plans in order for their child with a disability.

Phillip with his parents, wife, and sister’s Sarah and Grace

“We often talked about future planning in our family. When I was going away to college, my parents sat me down and explained how they prepared for Sarah’s future. They said she would live with one of my cousins if my parents both passed on. I told them ‘absolutely not! Sarah and Grace (the youngest, typical sister) would live with me’.”

When Sarah was born 28-years-ago, doctors told her parents she would
never learn to read, among many other limitations. However, today, Sarah works as a second grade teacher’s aide, tutoring students in reading.

 

Clark credits Sarah’s success to his parent’s diligent planning early on. “They always focused on her abilities, and they always included my typical sister, Grace, and I in the decision-making process.”

Phillip Clark with his sisters, Sarah and Grace

In his professional experience, Clark has found that parents who didn’t plan are struggling as their child ages.

“Some of these parents are in their 60s, and their adult child is in their 40s. Many didn’t plan, and now there’s not much help for them. Most end up in government run day programs, because the parents can no longer care for them at home.”

His advice, start early and think abundantly about your child’s future. Include your typical children as early as possible in the future decision-making plans.

Clark is optimistic about the opportunities that individuals with special needs and their families currently have. He believes these opportunities will continue to grow as awareness continues to get stronger.

“The generation before Sarah was often institutionalized because people didn’t realize the profound impact that individuals with special needs could have on their families, communities, and businesses. Sarah’s generation was the first to widely stay at home with their parents; but the awareness and opportunities weren’t yet there for them to be fully included in all aspects of life. The next generation will have countless opportunities for inclusion, and parents need to be prepared for this new reality.”

Clarks says it’s not enough to plan financially. 

His personal journey allows him to understand the difference in planning  special needs families face, compared to typical families. He explains that every aspect of your family’s life and child’s life must be carefully considered.

It is important to plan financially, but equally important to create a Life Plan and a Resource Plan. He says you must make a Life Plan for your child that gives him or her every opportunity to live a purposeful, impactful life.

As for Sarah, Clark says she is busy leading a fulfilling and purpose-filled life, but he’s prepared to help her when she needs him.

Clark is a Special Needs Planning consultant licensed to serve families in every state. He provides Life, Resource, and Financial consulting services and referrals for Legal Planning. He also created a database of resources for special needs planning. See what services Clark can provide your family here.

Inclusion Evolution and it’s author did not received any services from Clark or Enable Special Needs Planning.

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Worth More Than a Test Score

Want to really make a parent of a student with Down syndrome cringe? Bring up assessments, especially IQ testing. Sitting around a table, outnumbered by school professionals, describing in detail how your child doesn’t measure up. I’ve been through it (albeit, not IQ scores) and Troy is only in preschool!

Why is this being done and what can be done about it?

It’s understandable that schools must use some sort of assessment to decide eligibility for special education services. The key word here is “services.” Special education is not a place, but a service!

I repeat, federal law does not define disability services as a special education classroom, but instead a “free and appropriate education” in the “least restrictive environment.”

But many school district use IQ testing and other assessments to systematically segregate students.

The school district I taught in called it “tracking.” Supporters of tracking or ability-grouping say it allows students to learn at their own level, and prevents teachers from having to teach many different abilities in one classroom. I argue that the costs to students in the low-level, or special education classroom, negates the benefits to the students in the advanced classes.

Instead, why not follow federal law and court precedent that calls for inclusion with needed supports in the general education classroom? Why not execute a true “Individualized” Education Plan (IEP), instead of systematically creating “places” for groups of students to be served. If a student is best served in a separate room so be it, BUT it should not be an assumed, systematic practice solely based on the student’s test score or disability.

New Approaches to Assessing the Strengths and Weaknesses of Students with Down Syndrome:

“It’s misleading to take that one score and portray the entirety of that child. May be that child functions well when you do non-verbal skills. Parents should make it clear during the testing that the teacher should sit down and understand both your child’s strengths and weaknesses,” says Dr. Jamie Edgin of the University of Arizona.

For the past decade, Professor Edgin has been researching better ways to assess students with Down syndrome. Her team is currently working on two types of cognitive test batteries. The Arizona Cognitive Test Battery is for students 7-years-old and older, and a newer iPad assessments for preschoolers (some of whom are completely non-verbal) called the Arizona Memory Assessment for Preschoolers™. Unlike IQ tests, that are a global assessment with a cut off score, Edgin’s set of tests assesses multiple domains of strengths and weaknesses.

UC David MIND Institute is testing adults with Down syndrome

Another method being developed at the UC Davis MIND Institute breaks down scores below the IQ cutoff (the most common IQ tests are not able to measure cognitive ability below a certain level).  “A child placed in a new special education classroom may be given the Stanford-Binet IQ test and obtain a floored score showing no variation in performance, which would give the impression that he is simply low functioning and has no real cognitive strengths or weaknesses,” says David Hessl, UC Davis professor of psychiatry and behavioral sciences and the study’s senior author. “But if our scoring method is used, you are likely to find that particular verbal skills are relatively better, or there are unique visual spatial strengths, and that might help you to better serve his needs.”

The problem is neither of these new methods to test students with Down syndrome are widely available in school districts across the country. “You have to function within the way the school system works. These batteries haven’t been around long enough, and tested enough students to be widely accepted,” Dr. Edgin argues.

So, what do we as parents do when our child’s school wants to use a traditional IQ test?

3 Alternatives to Traditional IQ Testing of Students with Down Syndrome:

  1. Refuse: IQ Testing is NOT required for Special Education services, so many parents refuse the test.  Even when a school district argues that a designation of “intellectual disability” cannot be used without an IQ score, parents have gotten around the pesky assessment. Usually by using the “Other Health Impairment” designation instead. Both ID and OHI should be measured by a wide range of assessments and observations, not necessarily IQ scores. Before your child turns 18-years-old, find out what your state requires for eligibility to adult services. Some states require an IQ score to receive these services.
  2. Request a Better Test: Professor Edgin says it’s worth asking for a Differential Abilities Scale, which gives a wide range of scores with strengths and weakness. If your school refuses, and you have the financial ability, an outside assessment may be worth your child’s time.
  3. Advocate: Ask what test is being given and how the scores will be used. It’s your right to know which assessment your child will be given, and what impact it will have on their education. Never sign an IEP or assessment form without understanding the implications of test results. Another good tip: ask for the test results before the IEP meeting. That way you can leave your emotional response to the test results at home, and better advocate for your child at the meeting. Also, ensure that strengths and areas for improvement are a focus of any conversation.

Know that your child is worth more than one test score. Know your child’s rights, and don’t be afraid to advocate!