Posted in Autism, Down syndrome, Education and Special Needs

Blog #46~A Day in the Life of Nick

Blog #46~A Day in the Life of Nick

This morning I am prepping for Nick’s IEP meeting to be held at 11:51 a.m.  I review all of the progress reports that I requested ahead of time. It is essential to get those reports early so you know what is going on.  Plus it saves time during the meeting.  I have more tips in Blog #24~Top Ten Things I have Learned While Navigating Nick through School, (located in the October archives). I want to give you a glimpse into the day in the life of Nick’s world at school.  What does someone like Nick who has Down syndrome and autism (lacking reading and writing skills) work on in school?

His day starts early, the skies are still dark when the bus rolls up at 6:30 a.m.  Most mornings Nick is dragging but when I mention it’s a community day he tends to perk up a little quicker.  The first two periods of Nick’s day are called “Life Skills.”  The class looks at the calendar, works on dates, upcoming events and the weather.  Nick enjoys telling others about the weather and is consistent in picking out the correct icon and working the weather page on his iPod Touch Chat program. After calendar, the students practice yoga.  They are following the “Get Ready to Learn Yoga Program.”

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This is followed up with reading skills working on IEP goals of community safety words and pictures, computer programs and group news sharing session of current events.  On Thursdays there is a cooking unit.  Nick loves it and has tried several new foods this year including chili mac, waffles, pancakes, chocolate chip cookies and spaghetti tacos.  Now I am hungry! 🙂

Here’s an example of a recipe they use at school for monkey bread…….

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Third period is called “Home Maintenance.” During this time Nick prepares a simple snack.  He makes a choice using either his picture icons or iPod Touch Chat.  He likes Cheezits, pretzels, popcorn, salami and cheese. Here he is able to practice fine motor skills like cutting and opening packages with the occupational therapist.  He also works on hygiene skills, (brushing teeth, putting on deodorant and body spray, etc…).  For practical information and visual supports about hygiene and dressing be sure to read  Blog #22~Grooming 101 (located in the September archives).

Nick takes adapted physical education in fourth period.  Units include soccer, swimming, basketball, volleyball, badminton, kickball, adventure education and walking.  He really enjoys the interaction with peer buddies in class.  Period five is lunch time. 🙂

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In the afternoon for periods six through eight, Nick has “Vocational and Community” skill building. Nick is working at job training sites three days a week.   These include Tabor Hills (retirement home) and Re-Store (Habitat for Humanity) where is responsible for vacuuming.

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His third job is at Adopt (animal shelter) where he removes leaflets from stacks of newspapers for cages.  On the other days he has school jobs which include shredding, work bins, rental laundry.  Wednesdays I have no problem getting Nick out of bed. It’s community day. 🙂 He enjoys it and is so happy being out and about.  The activities include dining out both at fast food and sit down restaurants, mall walking and shopping at Wal-Mart for groceries to use in the cooking unit.  Here he works on his goal to pay with a debit card.

Nick trying on sunglasses at the store…… He’s looking pretty fly!

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He can manage a grocery cart (with reminders to not purposefully run into items or people)

Ramming speed ahead! You should see Nick barreling through Costco 🙂

grocery cart

That is the day in the life of Nick in high school.  His days are filled and structured during the week from 6:30 a.m. until 2:30 p.m. He loves going to school and enjoys the staff (and giving them a run for their money.) That’s what is in my noggin this week.

~Teresa

Posted in Augmentative and Alternative Communication (AAC), Speech and Occupational Therapy

Blog #45~Can We Talk?

 

Blog#45~Can We Talk?

How does someone like Nick who has Down syndrome and autism communicate his needs and wants?  Let me start at the beginning.  When Nick was in the infant program he was taught sign language.  He would sign “more, all done, yes, no and other basic words.”  Using sign language gave him a voice when the low tone of having Down syndrome slowed up his speech.

When he was around 4 years old I began to snap photographs and put them on one of those blue school pocket charts.  These pictures included things he enjoyed like juice, Goldfish, Thomas the Train and Barney videos. These worked great and he understood all of them.

In first grade I requested an assessment to see if he would do better with an augmentative and alternative communication device. According to  About.com, Augmentative communication is an alternative way to help students and adults with language disorders use expressive language or receptive language. Augmentative communication can be accomplished through assistive technology devices such as computers or hand held devices. Low technology such as picture communication systems can also be used as augmentative communication.

The evaluator came out to the home to try some of the voice output devices with Nick.  He just stimmed on the devices,  hitting the buttons rapid fire like a DJ scratching a rap record.

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The evaluator concluded that it would serve Nick better to use a low tech picture system to help him communicate.  She gave me a handful of laminated pictures (goldfish, chicken tenders, pasta, milk, juice and Coke.) They were like rare, gold coins that I treasured. (There was nothing like Google Images back when he was 6 years old.) You either had to snap photographs, cut out pictures out of magazines or beg for icons from the speech therapist. Note that around this time, Nick was also diagnosed with Verbal Apraxia of Speech which further complicated his ablility to articulate.  For years, Nick used pictures and sign language to communicate his needs.

Since Nick can’t read or write and his verbal skills are limited, he needs support.  What we learned is that someone like Nick who has autism tends to see things clearly with pictures.  If he can see it, he can understand it.  In fifth grade the school team was trained on how to use the PECS (Picture Exchange Communication System). There is a precise protocol to the system.  Once the protocol was followed, Nick made great strides in using the pictures to communicate wants and needs. He finally had a voice! 🙂

The cost of buying the software used by most schools is steep as well.  A Mayer-Johnson Boardmaker program can be $400-$800 dollars!  However, if you are a parent you can purchase these programs for 1/2 price. 🙂  Also if your CD gets damaged (aka, Nick dropping it from the second floor) they will replace it for no charge.  Check with your support teacher, as they should have access to this software and will make any laminated icons you might need for home use.  In addition, check with your local library and agencies like Easter Seals to see if they have it available to check out.

Most of the time Nick puts the pictures and icons on a velcro strip and hands it to the caregiver.  However sometimes he gets a little more creative. 🙂

“Hey Mom,  I’ve laid out my plan for what I want to do now”……..

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Poor Kitty, nap interrupted………..

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The next re-evaluation came in middle school.  The team decided to try Nick on a voice output device.  He was given a set amount time to just play and stim on it.  But then, he began to understand that the device was to be used to communicate.  There are all sizes and the cost for these can be thousands of dollars. Nick’s was around $8,000 dollars.  The Dynavox V was the Cadillac of AAC (Augmentative and Alternative Communication)  devices that would grow with Nick. This was provided by the school district. We found out later that the Dynavox V had major drawback.  It was that it was heavy and bulky.

Dynavox V or as we named it “The Brick”……

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After a few years with the Dynavox,  We looked into other devices that would be more portable and less obtrusive. We ditched the “Brick” and moved to an iPod touch loaded with a program called Touch Chat.  Another popular program is called Proloquo2Go.  I like Touch Chat because you can upload your own pictures as well as using theirs. Both programs are excellent. The iPod is protected and enhanced with sound using a case with speakers- (iMainGo Speaker case.)

imaingo case

In essence, it is an electronic version of his PECS communication book.  He still needs a lot of practice using it properly without stimming on it.  The jury is still out on whether this will take over as his primary means to communicate.

Touch chat screen….

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Finding the means to help Nick’s communicate continues to be a work in progress. If he is on the phone with you he might say hi and your name if he recognizes your voice.  But mostly he will smile and wave.

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He continues to use some verbal speech,  sign language, Pecs picture book and the iPod Touch Chat.  It’s like walking down the stairs.  Sometimes you need to hold onto the handrail and sometimes you don’t.   All of these communication methods are his handrail that support and facilitate his speech.

I have learned that there is no perfect way to help with speech.  All of these serve him and have their drawbacks.  It’s always good to have the backup PECS book in case the batteries die or the device goes for an unexpected dip in the pool. I hope this gives you some insight into the evolution of Nick’s way of talking through the years.  That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Behavior/ ABA, Speech and Occupational Therapy

Blog #20~ Is That Age Appropriate?

Blog #20~ Is That Age Appropriate?

Yesterday, I ordered Nick’s senior portraits online with the sound of Thomas the Tank Engine in the background. Sometimes it feels like I am living with a perpetual three year old. It got me thinking about some of the toys, music, and DVD’s we have weaned him off of in order for him to be more age appropriate. Yes, he is still drawn to some of that stuff.  Last week, we were in the waiting room at speech therapy and Nick grabbed up a Fisher Price musical toy. A couple of four and five year olds looked at him oddly as he towered over them swaying side to side to the song Twinkle, Twinkle, Little Star which blared out of the toy with blinking lights. That is Nick’s idea of heaven. I had a flashback to seventeen years ago of the special needs support group meeting back when we lived in Houston.  The guest speaker was a mother of an eighteen year old who had Down syndrome.  I still remember her words in that sweet Texas accent, “What looks cute at age three is not going to be at age thirteen. She was right, I get that now. I asked him to give me the music toy so he could go in with his therapist, Brian. Suddenly he let out two words clear as a bell…..”Oh shit”…. now THAT was age appropriate.

I spent a lot of time over the years researching toys and activities that would enhance Nick’s development. There are several resources listed on my website.  Just the other day I stumbled upon a great site for age appropriate activities broken down in age groups.  Check it out at http://life.familyeducation.com/child-development/activities/63988.html.    One of my favorite bloggers is Noah’s Dad, he has his finger on the pulse regarding young babies and children with Down syndrome, check him out at: http://noahsdad.com.  He offers a wealth of information, links for great toys for younger kids and Noah is absolutely the cutest thing. One more note regarding age appropriateness for our kids with special needs, take pause in what the age level of manufacturer’s label states. It’s important to look at the developmental age of the child.  For instance, if the child is ten years old and functioning like a six year old, it would be wiser to pick a toy that fits their functional ability. Bottom line, you want your child with special needs to enjoy the toy and not be frustrated.  Autism and frustration is never a good mix!

As a mom, you want your child to fit in.  I can’t control the behaviors of my son that make him stand out in public (hand flapping, rocking, and loud noises that sound like a baby calf mooing.) But I can make sure he is dressed stylish and that he won’t be walking around with a baby toy that will make him stick out even more than he already does. In addition we ditched the Dynavox (aka “The Brick”)  that was his speech output device.  It was too big, bulky and not functional out in the real world. It has been replaced with an iPod touch chat program.

The old school CD player with nursery songs is long gone too…….

Nick had his own playlist at age 5…..

Look at that yoga boy…. so bendy 🙂

So here is the current state of Nick and trying to keep the cool factor going…..

Nick’s iPod playlist= It’s everything from Lady GaGa to LMFAO and in between including some gangsta rap that his brother, Hank got him hooked on.

Nick’s top movie picks= Mrs. Doubtfire, Little Man, Cats and Dogs, Stuart Little, Babe, and Cat in the Hat.  But he really digs anything with Eddie Murphy- Dr. Doolittle, The Nutty Professor and Norbit! 🙂

While I think Nick would be perfectly happy staying with the kiddie stuff, I have this longing for normal.  I wish he could play Wii/ X-Box video games and Angry Birds like other teenagers.  But that is my dream not his.  I have to remind myself to find a balance.  I need to remember the things that bring him happiness, resonate and connect the “dots” for him. Much like that furry, stuffed animal or blankie we hold onto from childhood, Nick still longs for some of those simple toys and watching Thomas the Tank engine every once in a while to make him feel secure. At home we allow it. He is safe with his friends Thomas and Harold the Helicopter.

 Today, naughty Harold made the cat’s head his landing strip, flipped the light switch repeatedly…hardy har har… and proceeded with some “*Tomfoolery”  at the stovetop….  

Soar high Harold……he rocks Nick’s world 🙂

Age appropriate no, but sometimes it’s kind of fun to not act your age.  That’s what’s in my noggin, until next week have a great Labor Day my friends.

~Teresa

*According to Randomhouse.com *Tomfoolery is foolish or silly behavior. A tomfool was originally Tom Fool, with Tom, a nickname from Thomas, being a stereotypical male given name. Tom Fool is thus a sort of fourteenth-century equivalent of our modern Joe Cool. As a (fictitious) proper name, Tom Fool is first recorded in the fourteenth century; a sense ‘a person who plays the part of a fool in various dramas; buffoon’ appears by the seventeenth century. The generic sense ‘a foolish person’ is first recorded in the early eighteenth century.