Tag Archives: autism

Noah’s Mermaid Sequin Pillows – Supporting Meaningful Employability and an Entrepreneurial Spirit in the Down Syndrome and Special Need Community

noah pillows heart 1

https://www.etsy.com/listing/514903650

Have I got a story for you!

Noah has come a long way from the little baby who would fall asleep in his infant carrier if left unstimulated for more than 5 minutes.  At 10, Noah has no trouble staying up with his 6 siblings still at home; he fits right in with his church friends and neighbors, and he absolutely hates anything that even resembles resting except at night.

Our family has been undergoing some changes as my Etsy embroidery business is coming into its own, and we are shifting from relying on corporate America to sustain us financially to exploring more local opportunities and flexing our own entrepreneurial muscle with several family businesses.

Andrew’s expertise is keeping him in business development with an eye towards entering the field of property management in the Austin/Dripping Springs/Wimberley area, and I (Alyson) have my machine embroidery business over at http://www.21reasons.etsy.com.

Leah (15) has been learning everything there is to know about essential oils in hopes of developing a product line of functional essential oil products.  She is also entering into the field of pyrography, which combines her artistic ability with an application in wood burning.  More to come on that!

Andres (13) has started his own lawn care business specializing in mowing and weed-eating.  He went from having to borrowing his dad’s mower to acquiring his own and then adding a leaf blower and weed-eater all within a few weeks.

Eden (12) is our resident animal expert.  She is quite the animal rescuer, nursing every little thing that comes along back to health against all odds.  She does the impossible.  Think you have to have an incubator that automatically rotates eggs to hatch chicks?  Apparently you don’t; well, at least Eden doesn’t.  Her latest feat was hatching several eggs that had been abandoned by their mother hen, and all she had was an old heat lamp and a plastic bin.  She has a thriving egg business here in Wimberley, Texas.

That brings us to Noah (10).  Noah’s been watching with great interest all the money that the kids have been earning (and spending).

Before I go much further, let me give you some background:

THE STORY:  Visiting with a dear friend one afternoon, she shared with me how much her father, who has advanced Parkinson’s disease, enjoyed this fantastic reversible sequin pillow that he could run his hand back and forth over to change the sequin colors.  A color fanatic myself, I was totally intrigued and set out to find one of these pillows for my son, Noah, aged 10 with Down syndrome.  After searching high and low I came across one in a retail establishment for $30.  I snatched it up, brought it home, and Noah LOVED it!  Well, so did his siblings, all 6 of them!  It wasn’t long before other people we knew started coming to mind as needing to have one of these pillow.  Using my contacts in the embroidery business, I came up with higher-quality zippered reversible sequin pillows that I could assemble for $20 a piece before embroidery – 33% less than what our first pillow cost us.
We passed one of our completed pillows along to a neighbor with severe autism who is usually nonverbal.  After we showed him what it did and gave him time to process the information, we were surprised to hear him say Gracias.  He spent the next two hours tracing patterns in the pillow and now keeps it by his side.  We’re delighted!!!!
As I started putting the pillowcases and pillows together that we were gifting to our friends, I realized this was work that Noah could do, with some help.  That’s how Noah’s Mermaid Pillows were born.
THE PROCESS:  The pillow covers are manufactured, and I add an embroidered name to the back if requested.  Then the components are assembled, bagged and labeled for shipping.  For the pillows Noah assembles, he takes the pillow cover, unzips it, inserts the pillow (which, believe it or not, takes some serious coordination to do all the pulling and tugging and stuffing), and zips up the cover.  For every pillow Noah stuffs (starting at 5 a week), he receives $5 – $1 for spending money, and $4 to go towards the speech therapy and therapeutic horse riding at http://www.RedArena.org that helps to keep him at his best.  Our hope is that we could give back to Red Arena and allow the scholarships they have so graciously gifted to us to be passed on to another child.  Noah will participate in some way in every single Noah’s Mermaid Pillow order.  Every packing slip will be hand-signed by him; he’ll also be helping in the packing and shipping department.  This will introduce him to processes and procedures necessary in business with an eye towards meaningful employment or a greater role in http://www.21reasons.etsy.com in the future.
On our first pillow-assembling session, Noah stuffed 6 pillows, and our work time quickly turned into a speech therapy/occupational therapy session (with awesome cooperation from Noah).  We practiced talking about everything we were doing; zip, open, push, pull, etc.  We also practiced our colors as each pillow had two colors depending on which way you swiped it.  As soon as we get our first order, Noah will practice counting money, fulfilling orders, printing and placing address labels, signing orders, etc.  And I’m thinking he’ll be adding a special sticker to each mailout as well – we are still trying to capture each occupational therapy opportunity possible.  Noah will also be going to local businesses that have waiting rooms, introducing himself, and with some help, asking for an opportunity to leave a pillow as a gift and for advertising purposes.
Are ya catching our vision?  Let me know, because I have some ideas on how you can help.  Just leave me a note in the comment sections and I’ll get back to you!
For those wishing to purchase one of Noah’s Mermaid Sequin Pillows, follow the link . . .
Blessings,
Alyson
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Robert Ethan Saylor – When Push Comes to Shove, What Do We Really Believe?

Author’s Note:  As a mother of a 6-year-old with Down syndrome, I have considered this post carefully and tried to temper it with my desire to encourage and support others in the Down syndrome community.  If I have failed and caused pain or antagonism, I ask for grace as I try continually to parent best a child with a disability and share him with the world.

I came across the news story of Robert Ethan Saylor back in January.  You can read about him here:  http://www.huffingtonpost.com/2013/03/26/robert-ethan-saylor_n_2958777.html.  Have you seen the story?  Robert Ethan Saylor was the adult with Down syndrome who died after struggling with and being handcuffed by police officers in a Baltimore movie theater.  He had finished watching Zero Dark Thirty and was left alone in the theater while his caregiver went to fetch the car.  During that time, management asked the man to leave, he refused, and police officers moonlighting as mall security guards were called and responded to the scene.  Robert got angry, cursed at them, a struggle ensued, and he wound up in a heap on the floor with the police officers who subsequently handcuffed him.  He died from asphyxiation, complicated by serious heart issues related to his Down syndrome.

My heartfelt condolences go out to the Saylor family, and I am greatly saddened that this world has lost another precious person with Down syndrome.

Saylor family lawyer Joseph B. Espo had this to say accusing the police officers of misconduct, “One of the options they had was to simply tell the theater manager, `We’re just simply not going to deal with this.’ They should have and could have just walked away,” he said.”

His point is that because Saylor had Down syndrome, his right to behave antisocially trumped the officers’ duty to do their job.  Their job was in this case to enforce the rules of the movie theater.  But Espo says, “They should have and could have just walked away.”

Hmm.  Why?  Why?  If I was the one in the movie theater and the officers said, “We’re just simply not going to deal with this,” we would call them lazy, cowardly and insubordinate, right?

A huge part of the Down syndrome community is outraged and is calling for specialized police training specifically aimed at how to handle people with Down syndrome.  Recently there has been a similar push for the same kind of training for police officers handling people with autism.

So let me get this right:

1.  People with Down syndrome and other disabilities like autism deserve to be treated just like everybody else.

2.  People with Down syndrome and other disabilities deserve to have the same opportunities as everybody else, regardless of the cost to society.

3.  We should accept people with disabilities just like they are and stop trying to “fix” them.  This is an argument I hear a lot regarding people with autism.

Which brings me back to statement number 1.

People with Down syndrome and other disabilities like autism deserve to be treated just like everybody else.

Everybody else?  If “everybody else” refused to leave a theater after a movie was over, “everybody else” would be asked to leave, told to leave and if they didn’t leave, they would likely be handcuffed.  Robert Ethan Saylor was treated just like everybody else.

The medical examiner’s report includes the fact that Saylor had a reported medical history of anger issues, especially when confronted or touched.   Combine that with the fact that he weighed close to 300 pounds.  Add in his cognitive delay which is part of Down syndrome.

So you have a very large man with Down syndrome with significant anger issues left alone in a public place, and his death is on the officers’  heads because they had to restrain him and that restraint led to his death?

Have you ever seen a teenage boy or young adult with Down syndrome when they are angry?  I witnessed this at a Best Buy recently.  A teenager with Down syndrome was swiping things off of the shelves on to the floor and yelling.  The father had to throw the boy over his shoulder and leave the store.  He was not anywhere near 300 pounds, and it was still terrifying.

Part of the battle cry is that because of Saylor’s obvious Down syndrome, he basically should have been left alone and not expected to abide by the rules.

If it was me, I should have been arrested, but because Saylor has a developmental disability, he should have been excused.

Hmm.  Back to point 1.

People with Down syndrome and other disabilities like autism deserve to be treated just like everybody else.

Oh, and then there’s point 3.

We should accept people with disabilities just like they are and stop trying to “fix” them.

Saylor’s obesity and anger management issues probably are in large part due to that point #3.  He was probably allowed to eat as he pleased and act out most of his life because “it’s the Down syndrome.”  (insert autism, deafness, PPD, ADHD, ADD, bipolar disorder, communication disorder in the blank as appropriate.)

I have had the blessing lately of helping out in a preschool environment once a week.  In just four months time, I have witnessed two children, completely unrelated, going from happy, outgoing, well-adjusted 3- and 4-year-olds to two children who completely space out on occasion, stimming, spinning, avoiding eye contact, humming as a calming mechanism, etc . and my guess is they are on their way to autism.  Why?  Because for these precious children, the environment they are in is completely overwhelming and overstimmulating.  Because of their personalities and the unique way God made them, they are not ready for the crazy environment of preschool that they are being thrown into.  I have sat both of these children off to the side with me and talked to them quietly and sensitively and they have responded positively.  Is sheltering and delayed mass socialization the solution for every kid with autism?  No, of course not.  But we are losing our children left and right to diagnoses, and at least some of them can be prevented or treated organically.  I think moms instinctively know this, but our culture has made it tantamount to a crime to even suggest that a parent might be able to do something to help better the behavior and social skills of their child.

That’s what occupational therapists, physical therapists, speech therapists, applied behavior analysts are for is what we’re told.

Since when do we need a paid professional to equip our children for the world around them?

Since when?  Since moms and dads decided it’s more important to have two incomes than to raise the children they brought into the world.

Since the media and special interest groups have made it unconscionable to try to “fix” our children.

Since we as a culture have valued individuality above all us, even when one person’s right to be an individual and not be “fixed” robs everybody else of the opportunity to make and maintain rules and order.

Why should Robert Ethan Saylor or anybody else for that matter have the right to sit in a movie theater long after everybody else has left and I not have that same right?

My solution is this:

Can we give business owners, school principals, teachers, parents, Sunday school leaders, pastors, police officers and movie theaters the right to make the rules and to enforce them, and if your child is somehow unable to comply, can we put the burden on you to bridge the gap unless these people themselves want to bless you by bridging the gap for you?  Actually that used to be the standard, but somehow in the past 10 or 15 years, that standard and those rights have been slowly eroding.

Can we leave teachers alone and let them teach our children who can learn easily alongside everybody else and give the kids with special needs the aids they need, one on one if necessary, so that they can either also learn alongside everybody else or go off to work in an environment they can learn in?  Can people who are designated guardians or caretakers take responsibility for their charges’ behavior and do whatever is necessary to ensure they comply to the same rules everybody else is following whenever possible?

I am so, so thankful for the grace and support Noah’s team gives him.  We have Sunday school teachers, AWANAS leaders, gym teachers, neighbors and family members who are willing to go a little slower, be a little more forgiving, give a lot more grace and share more encouragement with Noah.  But God forbid I should ever demand it from anybody.  All of these people have graciously given it freely and when I expressed concern about undue burden, they have done more reassuring than I could have asked for.

To the police officers and movie theater management involved in this case, I support you for doing your job and for having the right to enforce reasonable rules.

To the Saylor family, I am sorry for your loss – the loss to your family, the loss to your community, the loss to your world and mine.

1 in 50 School Children Have Autism? Really?

According to http://www.foxnews.com/health/2013/03/20/health-officials-1-in-50-school-kids-have-autism/?test=latestnews, health officials report 1 in 50 school-aged children have autism.

Really?

Panic.  The masses cry epidemic, it’s getting worse, spiraling out of control.

Slow down.

Let’s consider the facts.  Here are some questions YOU SHOULD ALWAYS ask when new research is presented.

Who did the study?  The Center for Disease Control and Prevention.

What were the results of the study?  Well, the headlines read 1 in 50 School Kids Have Autism.  What it should read is 1 in 50 Parents Claim their Kid Has Autism.”

Big, big difference.

How was the study carried out?  These results were obtained via a phone survey in which only 25 percent of those contacted agreed to answer the questions.  Do you suppose most of those 25% answered the survey because they were more interested in an autism study because they at least suspect their child has autism versus parents who do not?  So another caveat to the results has to be that out of the people who agreed to participate in the survey, 1 in 50 reported their child has autism.  No proof of objective diagnoses was required, although the question presented was whether the parent had a child diagnosed with autism.  Hmm.

Strange timing for this study considering that the DSM-5 (Diagnostic and Statistical Manual) is set to have much stricter diagnostic criteria for autism, meaning diagnoses will drop considerably and many of those diagnosed with the disorder will lose their diagnosis.  The new DSM is set for publication in May 2013 – just a month and a half from now.

Granted,  I don’t understand the timing.  It seems to me likely that the CDC will use this elevated 1 in 50 number and compare it in another year or so to the numbers of people diagnosed with autism then.  Seems a little fishy to me.  Wouldn’t you think we’ll see impressive “decreases”?  The ink on this study is still wet, and yet we are already hearing from autism advocates that this new 1 in 50 number requires more funding, more services.

Friends, there’s a reason the new DSM is getting stricter on the diagnostic criteria for autism.  My guess is simply that they recognize it is being over-diagnosed.  I’ve babysat for a child with severe autism.  I know it exists.  I know milder forms of autism truly exist.   Surely there are some children who because of their disabilities do not respond to typical behavior modification efforts.  I know the struggle and the judgment that can come because of this.   Those are the kids who will not respond even to ABA therapy, and for those children and their parents we do need to extend understanding and whatever supports necessarily.

The majority of kids “on the spectrum” do not have a condition that truly debilitates them when it comes to their behavior.   Challenges, perhaps, but all our children have behavioral challenges, well, at least all mine do.  These diagnosed kids may need things like OT, ST and PT, they may have social challenges, but to add ABA therapy to the mix with a wink and a nod denies parents the opportunity to be the chief shapers of their child’s behavior.  May it never be true that a ABA therapist or psychologist would ever care more for a child than its own parents.

What I have seen is that many parents with kids with ASD use that diagnosis not as a tool to understand better how to train their child, but use it as an excuse for the poor behavior of their child.  And the medical and therapeutic community promotes this and prescribes ABA therapy – the miracle therapy for problems associated with autism.

Let’s look at ABA therapy:

I’ll borrow some language from www.autismspeaks.org, an organization that has done much for promoting advocacy and research within the autism community.  Here’s how they explain the basics of ABA therapy – you can find the complete article here:

http://www.autismsupportnetwork.com/news/proposed-dsm-5-changes-regard-asd-3478294

“ABA Techniques and Philosophy:  * The instructor uses a variety of behavior analytic procedures, some of which are directed by the instructor and others initiated by the learner.
* Parents and/or other family members and caregivers receive training so they can support learning and skill practice throughout the day.
* The learner’s day is structured to provide many opportunities – both planned and naturally occurring – to acquire and practice skills in both structured and unstructured situations.
* The learner receives an abundance of positive reinforcement for demonstrating useful skills and socially appropriate behaviors. The emphasis is on positive social interactions and enjoyable learning.
* The learner receives no reinforcement for behaviors that pose harm or prevent learning.”

(I do think ABA therapy is remiss in its emphasis in not actively addressing negative behavior, although I could see this may be a good way to initiate a behavior modification program.)

Look, I only went to community college for a couple years, but even I recognize this is based on Skinner’s  ideas about operant conditioning.  I learned that in Psychology 101.  Guys, ABA therapy is just a very regulated, extremely expensive, highly structured  and heavily monitored form of good parenting.  Our culture is demanding that good training of children should come at the expense of taxpayers and insurance companies and should be initiated by someone other than the parents.   That said, I recognize that many parents were never parented with purpose and may not have the tools to parent with purpose themselves.  In that case, ABA therapy or counseling sessions with a child psychologist with intense parental involvement may prove to be very helpful.  There’s no shame in that.  That’s a proactive response to human limitation.

If you are  struggling with the behavior of your child, whether he’s been diagnosed with a disability or not, please consider if you are actively training your child to do the things you want him to do.  Does he hate making eye contact?  Many typical children are very resistant to eye contact; give them an M&M every time they look  you in the eye when you’re speaking to them.  Better yet, stand in front of them with a small dish of M&Ms.  Say their name.  If he looks at you, great, give him a big smile and an M&M and lots of verbal encouragement.   Repeat.  Encourage him to hold the gaze longer and longer.  Reward him with another M&M and verbal encouragement.  Repeat.  Repeat.  End the session, and for the rest of the day keep those M&Ms handy and give them each time he looks you in the eye.

Does he hit and screech when he doesn’t get his way?  Remove him from the situation, give him a time out, and re-enact the offending situation, only this time talk him through the appropriate way to respond, even using hand-over-hand assistance if necessary.  This is one step beyond conditioning, it’s training.  “No, that’s not the way you do it; THIS is how you do it.”  The results from that one approach alone has transformed behavior in our home.

I am hesitant to recommend any books about child training, because I have found there to be problems with each one and I don’t want to advocate some of the suggestions.  So, please, if you read any of these, take what you want and leave the rest:

To Train Up a Child – by Michael Pearl

Shepherding a Child’s Heart – by Ted Tripp

Dare to Discipline – by James Dobson – (This is a book I would not hesitate to recommend, even though I’m not on board with 100% of what he says.  The disagreements are pretty petty.)

The Bible – Proverbs – by God.  (Unconditional endorsement here.)

How about you, are there any books you have found helpful when it comes to raising kids?

How has ABA therapy differed from your natural parenting techniques, and what was the result?