Posted in Autism, Down syndrome, Feeding, Personal Hygiene, Toileting

Blog #67~Dear Abby, Down syndrome and Autism Style

Blog #67~ Dear Abby, Down syndrome and Autism Style…

Dear Abby

Advice Columnist, Dear Abby 🙂

It’s comforting to know that as a parent of a child who has Down syndrome and autism I can click the mouse and find support online. When Nick was born 19 years ago, a nurse handed me a couple of brochures on Down syndrome.  That was it!   This is the vision sustained me after hearing of Nick’s diagnosis of Down syndrome. Thank you, Chris Burke…..Actor, advocate, icon, my rock star!

Chris Burke

Ten years later we would meet Chris in person at the National Down Syndrome Congress convention.  (For more information: http:// www. ndsccenter.org)

My older son, Hank with Chris Burke at the NDSC  Convention……

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There are several groups that I belong to on Facebook. (Just type in “Down syndrome and autism” in the search engine.) These parents are going through many adversities trying to get through the day and night with their kids.  Most are sleep deprived because their children are up all night turning on lights stimming, banging things against the wall, and opening and slamming doors.  I dedicate this week’s blog to these brave warriors who get up weary, reaching for the Visine and Advil to take on another day.

autism and sleep cartoon

Down syndrome and autism support groups are a safe haven to share war stories, tips, get advice, commiserate and laugh.  No one flinches when a parent writes about a walk on the local nature trail, and stopping to go back to their dawdling child.  The 11 year old stood there having just pooped in the middle of the path. What can I say but, it happens.   Topics last week were varied.  One mom needed help on how to explain and guide her daughter about getting her period.  I added a comment about a great book that tackles puberty and body privacy issues called:  “Taking Care of Myself,” by Mary Wrobel.  There were dozens of helpful tips from other parents who had daughters that had dealt with this issue.  Another parent had just given birth to a baby who has Down syndrome.  I was moved by all the support given to this new mom. Here are just a few of the many offered to her:

  • “Go home and bond and love your baby”
  • “Congratulations you have been blessed.”
  • “Get regular checkups and a heart echogram to rule out heart defects.”
  • “Low muscle tone may make it difficult to nurse your child but don’t give up.”
  • “Focus on the baby, not the Down syndrome.”
  • “Go to www.noahsdad.com it has great information presented positively.”
  • “Check out www.futureofdowns.com it has a lot of good information.”

It’s good to know that the struggles of feeding, toileting, hygiene, sleeping, sensory, gross and fine motor issues are felt by so many parents.   For a long time I was alone.  I pulled away from the Down syndrome support groups because I didn’t fit in.  Nick didn’t progress like the kids who just had Down syndrome.  After Nick’s diagnosis of autism I reached out to the Chicago based group, National Down Syndrome Association: http://www.nads.org.  Within NADS, there is a group is called “More than just Down syndrome.”  I found a new home here.  We have a unique bond because these parents get it!

We’ve have been through it all with Nick.  Our days are far from perfect. He still wakes up some nights but at least he isn’t banging the walls or turning on all the lights.  But some things have become easier as he has matured into an adult.  Just yesterday we gave him the best, most cooperative haircut ever!  Miracles do happen. 🙂

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As I wrote about in Blog #66, reaching out to a support group has helped me realize that I am not alone on this path. I’m not the only one who has bent down and had to clean up my child’s poop.  Bless these warrior parents for getting up and fighting the good fight!  That’s what is in my noggin this week!

~Teresa

Posted in Behavior/ ABA, Feeding, Personal Hygiene, Toileting, Recreation/Leisure and Special Needs

Blog #22~ Grooming 101

Blog #22~ Grooming 101

A few weeks ago in Blog #18~A Cut Above, I wrote about the joys ha ha… of giving Nick haircuts along with a few other grooming issues.  I thought this week I would expand with some information on overall grooming and fostering independence in hygiene and dressing routines. While it seems like something we all just do without thinking, it’s not as simple as that.

Well, maybe it is for a cat. Miss Mellie makes it look so easy and peaceful……

So where to start, tooth brushing, bathing, washing face and hands, dressing?  Several years ago, a wise autism specialist once offered this piece of advice.  “Pick one thing on the day you pay your bills each month and that is what you will work on with your child until the next monthly bill cycle.”  This helps you as a parent to focus on one goal without being overwhelmed.  The second *pearl of wisdom I have learned is to make sure you have a block of time where things are relaxed to teach these skills. Mornings are out for us since the bus gets here at 6:30 a.m.  Uh, no are you kidding me, 6:00 a.m. is not going to be a teaching moment.

Let’s start with brushing teeth.  I like use flip up caps on toothpaste as it is easier for Nick to open up on his own.   By the way, why does the toothpaste fall off a toothbrush so easily but it sticks to the sink like glue?  We use a lot of visuals to help Nick navigate his world.  Autism 101, if he can see it, he will understand it.  Here is the step by step sequence we use for brushing teeth.

I found these sequence boards in a software program called   “Functional Living Skills and Behavioral Rules.”  There are tons of visual prompts in this program!

This software program has step sheets for everything from showering to feminine hygiene steps.  In addition, it offers daily living schedules, community skills, and behavioral rules.  Another great resource is a book by Mary Wrobel called “Taking Care of Myself.”  This is a must-have for a parent with a special needs child. For showering the steps are posted on the outside of the shower door facing in for Nick….

I wrote the steps on the back. To prompt I slide my fingers to each the picture while Nick is showering….

Here are a few other visual ideas for shower and shaving …..

Over the years I have also used a lot of modeling of these tasks along with the visuals.  During Nick’s shower, I often pretend like I am washing too. Why, because Nick can get lost in “receptive words”.   Too much verbal cues get him caught up in the shuffle.  Wiki.answers.com explains it as this: “Receptive language”  is the comprehension of language – listening and understanding what is communicated. Another way to view it is as the receiving aspect of language. (Sometimes, reading is included when referring to receptive language, but some people use the term for spoken communication only.) It involves being attentive to what is said, the ability to comprehend the message, the speed of processing the message and concentrating on the message. Receptive language includes understanding figurative language, as well as literal language. Receptive language includes being able to follow a series of commands.”  So for Nick, it helps to use fewer words and focus on the visuals and modeling the desired behavior. For example rather than say, “Nick you need to get the shampoo and wash your hair.” I would either point to the shampoo bottle and mimic the action or simply say “Nick, wash hair.”  It is succinct and he gets it.

Time for me to get clean and slicked up!

The goal is to work to diminish the cues whether they are verbal, modeling or visuals. This idea is known as “Least Restrictive Prompting.”  Teaching a behavior starts with putting your hand over the child’s hand to show them how to do it.  Then literally you begin to fade back.  From there your hand is over the child’s wrist, then elbow, upper mid-arm, shoulder and finally letting go and being within close proximity.  The end result is to help him foster independence in all of these tasks.  To date, Nick is able to get his grooming bin out of the closet and follow a routine with success.  He also has hygiene built into his curriculum at school.

Here is Nick’s grooming bin. He also uses body spray but that is kept under the sink that has a childproof lock since he likes to take it and spray all over the place including right into your eyeballs (see more of these shenanigans in blog #10~ Nano Second.)

Last week in Blog #21, I mentioned the word “buck naked.” Nick has absolutely no problem undressing.  However getting dressed can be tricky.  He often puts his pants and shirts on backward still to this day.  By laying the clothes out a certain way, Nick is more easily able to get this done correctly. Note the shirt is laid out backwards so he can grab it from behind and pull it over his head.  The pants are laid out over his feet straight up so he can put one leg in at a time….

 Voila, it works! 🙂

Here is another idea.  Put a smiley face on with painters tape on the tag area and cue this to be in the back.

Bottom line is this…. As Nick’s mom, the biggest gift I can give my son besides love is to teach him to become independent in all of these tasks.  He will gain confidence, pride and hopefully a spot in a group home someday.  Not every day goes smoothly.   Sometimes we just have to get out the door, and if Nick is moving slowly I don’t force him to do it on his own. Pushing Nick too hard can lead to frustration on both our parts so I pick my battles.  Easy as a cat taking a bath, no but it can be done.  That’s what is in my noggin this week.  I hope the Grooming 101 tutorial was helpful and maybe enlightening.  Make it a good one and until next Monday and here’s to looking slick and sharp.  After all, as the ZZ Top says….”Every girl’s crazy about a sharp dressed man….”

~Teresa

*Pearl of wisdom according to wiki.answers.com says that “The biggest connection I can see between a pearl and wisdom is they both take a long time to develop. Also, both a pearl and wisdom seem like small objects but are both very valuable, and they develop from grit