Adventure #16: We got a dog!

Meet the newest animal in our home:  Sully!  He is a Labrador and Staffordshire Terrier mix.  And yes, as my sister Erin quickly busted me, a Staffordshire Terrier is a sneaky way of saying pit bull.  But rest assured, we aren't drug dealers.

He is a super sweet, smart dog.  Now, I do hate puppies, so I am hoping his need to eat my shoes and jump up on everyone passes quickly!

ABC News article About Getting Special Needs Kids Out!

This is a great article about the expanded access of activities that can be so difficult for special needs kids.  Movie theaters, Santa Claus visits, restaurants, all things we have to avoid with Noah but would love for him to participate with us.  The article addresses whether setting up a movie theater showing as "Autism Friendly" is isolating these special needs kids.  I strongly disagree.  It allows parents to INCLUDE their child in something that they are normally excluded from because they can be so disruptive to others who don't understand and don't want their experience distracted by a special needs kid.  To speak for many, I would say all parents of special needs kids would like to expand their child's skills so they can attend any event.  These special needs events give children practice they would otherwise likely not have and give parents a far less stressful time out with their child.  And that haircut experience is exactly like the last time Noah had a professional cut...uggh.

From Haircuts to Movies, Businesses Reach Out to Autism Families By DAN CHILDS ABC News Medical Unit Oct. 21, 2009—

go.com

Judith Ursitti was not the first parent to dread taking her child to get a haircut. After all, kids fidget. They protest. And most will not be content until the cape comes off, the loose hair is brushed away and the stylist hands them a piece of candy or gum.

But for Ursitti, the experience with her 6-year-old son, Jack, was far worse.

"It would just be such a tantrum – he would just fall apart," said Ursitti, who lives in Dover, Mass. "Jack just wouldn't have any of it – he was just fighting a clawing. Basically it always ended up being a headlock situation, where I would hold him down and tell the stylist to cut as quickly as possible.

"We did manage to get a haircut, but never a good one. It was just so traumatic."

Doctors diagnosed Jack with autism four years ago. Ursitti said Jack today is considered to be on the severe end of the autism spectrum. And while he is making progress in communicating with others, there are still hurdles when it comes to certain activities – in many cases, activities that other families take for granted.

"Going into new places and transitioning into an environment where something unusual is going to happen is very, very difficult for children with autism," Ursitti said.

But today, a growing number of businesses are learning to make special accommodations for parents of children with autism. For Ursitti, a joint effort between the support and awareness group Autism Speaks, the salon chain Snip-Its and Melmark New England proved to be a godsend. Working together, the organizations developed a guide to help professionals and parents avoid some of the problems that arise when an autistic child gets a haircut. The principles of the guide are applied at Snip-Its, where Jack now gets his haircuts.

"There's something about that experience that really can be very challenging," said Peter Bell, executive vice president of Autism Speaks. "One part may be sitting still in a chair. Some of it also has to do with sensory issues – the clippers going close to the ears. All of these things really seem to interfere with a child with autism, and all of these things can be very harrowing for parents who want to get their child's hair cut.

"There's just a lot of tricks, so to speak, to make sure it's as pleasant and expedient as possible."

These "tricks" have now been incorporated into a brochure and a video to help parents and hairstylists. Today, Ursitti said Jack, who used to have to be taken into a back room to have his hair cut -- far away from the noise of hair dryers and the bright lights – can now have a haircut in the main area of the salon.

"Now he is able to sit in a regular chair with the cape on, sit patiently, and end up looking beautiful," she said.

Marianne Ross of Elkridge, Md., had her own epiphany, seeing how one business could be more autism-friendly, in the summer of 2007. She and her daughter Meaghan, then 8 years old, were asked to leave a showing of "Hairspray" at a local movie theater.

"She jumps up and down and flaps her hands, as do many children on the autism spectrum," Ross said. "Some of the patrons got the manager and wanted to get Meaghan to leave.

"I thought, 'how unfair,'" she said. "It just made me think, 'There's got to be some way she can go to a movie.'"

Ross met with Dan Harris, who, at the time, was the manager at the AMC Columbia Mall 14 in Columbia, Md., to discuss the possibility of renting a theater after hours for one night in order to let families with autistic children enjoy a night out. Harris went one step further -- he set up a special screening time for the families and only charged them normal admission. Together with help from their local Autism Society chapter, the movie screening became a reality.

"I really didn't know what the turnout was going to be like," he said. "But in the end, we had 300 people show up for it. Talking with the families coming in, we realized that we had something special."

The special showings have been taking place once a month since that first show in November 2007. Ross said her daughter, who after her experience with "Hairspray" was too scared to even enter a movie theater, now looks forward to the screenings. She said that as a result, Meaghan has gotten comfortable enough in a movie theater that she can now also sit through an entire show of a public movie screening.

As for the "Sensory Friendly Films" program, as it has come to be known, 81 AMC theaters across the country now feature special screenings for special needs children – a fact that still impresses Harris.

"I had no idea at that point it would expand that much," he said. "Just over the past 13 to 14 months it's grown eightfold."

Programs that accommodate kids with autism are not just haircuts and movies. Some restaurants around the country now feature special "family dinner" nights for families whose children have autism. Dental visits, like trips the hair salon, can pose challenges for some parents and their autistic children; as a result, Autism Speaks is also exploring a partnership with Colgate to disseminate information to help these visits go more smoothly.

A number of companies also offer special business cards to parents of autistic children. If their child is disruptive in a public setting, the parent can hand out the cards, each of which is printed with a brief description of what autism is and why their child is acting out.

Massachusetts General Hospital participates in a program called Autism Escapes, where private jet owners donate flights so that children with autism can travel to distant clinics for treatment -- something that is usually very difficult because the kids have a hard time staying still long enough for long car rides or staying quiet enough for commercial flights.

And Walt Disney World also caters to families with autistic children by offering them special passes that allow them to skip long waits in crowded lines.

"More and more businesses are recognizing this and creating opportunities to make their products or services available to the autism community," Bell said.

For the companies involved, it is good business. Not only do these businesses reap the positive PR from these efforts, but they also build brand loyalty with the families who seek their services.

In many cases, these accommodations also foster integration – an important aspect of the Snip-Its services, said Joanna Meiseles, who was president of the Snip-Its at the time the company began to develop ways to help families with autistic kids.

"I think that integration is an aspect that is very important," she said. "We are not hiding special needs children. It is so hard for parents with autistic kids to go out with them in public, so non-special needs children never really see special needs kids. I think it is good for them."

Dr. Wayne Fisher, director of the Center for Autism Spectrum Disorders at the Munroe-Meyer Institute, agreed. He said the integrative aspect of these events is good for the kids as well.

"When theatres, museums, churches and restaurants set up times when children with autism are specifically welcomed to their establishments... this sets up learning opportunities for the children with autism to learn the behaviors that are and are not appropriate for a given social event," he said. "Parents can correct inappropriate behaviors and teach appropriate ones in a comfortable environment without feeling like they have to leave the first time their child displays an inappropriate behavior."

Integration or Separation?

By and large, autism experts agreed that the programs are a good thing, both for the children involved and their families.

"We all need a time when we can be ourselves," said Wendy Stone, a clinician and researcher at the Vanderbilt Kennedy Center Treatment and Research Institute for Autism Spectrum Disorders (TRIAD). "For some of us it might mean going to a casual restaurant instead of a formal one, or wearing jeans and a T-shirt to spend time at a friend's house after a day at work. For children with autism it might be getting to see a movie in a theater that sells popcorn or sitting at a table in a restaurant and ordering from a menu."

Dr. Michael Wasserman, a pediatrician at the Ochsner Clinic Foundation and Hospital in New Orleans, La., said, "Providing these children with an environment in which they can thrive is always desirable. The businesses described are performing a public service."

But, he added, "At the same time, a long term view of not always isolating these children from their typical peers should be maintained. The public health view over the last decades has been to be inclusive for those with special needs, and care to strike a balance between special needs and 'mainstreaming' should be considered."

But sometimes even programs that set aside "special" events for special needs kids can act as a bridge to other public activities later on. Carin Yavorcik, spokeswoman for the Autism Society said that like Ross, many other parents may find that the AMC movie program lets kids with autism take become more familiar with certain public situations – and thus be more prepared to deal with them again in the future.

"For people who are affected by autism, it can often be very isolating for them," she said. "So this provides a really great opportunity for people to go out together and do something normal for a change."

For Ursitti, the very fact that some businesses are reaching out to parents like her makes a big difference.

"I think that shows a kind of attitude from businesses that recognizes that there is a large population of people on the spectrum who need these services," she said. "They need to have their hair cut; they need to be able to walk in the world and have these services. They're stepping up, and it's great."

Courtney Hutchison contributed to this report.

http://abcnews.go.com/Health/Autism/haircuts-movies-autistic-families-businesses/story?id=8874925&fb_ref=.Tt1K3FGGrWQ.like&fb_source=profile_oneline#.Tt5bL2Od7SZ

Adventure # 15: our Quest for a Dog

Anyone who knows me is probably a little confused right now.  I have a reputation for not being an animal person.  I do like animals, a lot!  I think its more that I just don't gush over anything, dogs, babies, the newest, cutest YouTube video.  I am low key.  Geoff has been itching for a dog for years.  Owen is a little nervous about dogs, but excited and Noah would love a wrestling companion.  I started thinking I would like a running and walking partner (besides my lovely sister, Andrea!). So, we have started a quest for a dog.

I think a dog would be great for Noah.   A large study done in Great Britain (http://bit.ly/vI9Pny)  demonstrated that dogs can help children with Autism with their social skills, self-care skills, provide comfort and reduce stress and anxiety.  Well, I'd say we could all use a little of that! Noah would also love all the tactile sensation of petting a dog.  I have visions of the perfect "Nana", the dog/nanny in Peter Pan who lovingly cared for Wendy, John and Micheal.

We saw a cute one on the Oregon Humane Society website and took the long drive out to the pet shelter to meet him.  Going there is a little like going to the Olive Garden, you check in and they give you a beeper and beep you when your dog is ready.  While waiting for our dog I was walking Noah around.  Noah started running.  Too late, I noticed a man kneeling down looking at leashes.  Side note about Noah, he loves men and he loves when they are crouched down because then he can dive on them.  I knew I wasn't going to get to Noah before he reached the guy.  So, I started calling out pre-emptive "I'm sorry, I'm sorry" over and over again.  Noah dives on the guy's back and nearly knocks him into the leashes.  I issue one more apology while I scoop up my kid and thankfully our beeper was going and we were ushered to our room to meet our potential doggy friend.

In comes Oscar.  He is an 18 month old beautiful black lab.  The handler with him is giving us all sorts of information that wasn't on the website.  The handler is saying that he is "mouthy" and likes to give "bear hugs". While I am kneeling down petting him, I am instructed not to look at Oscar in the face because he will take it as a "challenge".   This is so not the charming guy we saw on the website.  The handler also keeps emphasizing that Oscar is being abnormally good with us right now.  So, I have to say to her that he is beautiful but maybe not a good fit with the kids.  What I am thinking is "no to psycho Oscar".  She seems relieved to tell me that she "110% agrees".  

We walk around to look at the other dogs held there.   We saw a cute little Dauschaund.  I have a fondness for these little guys because my Grammy had one when I was little.  This guy hated Noah.  Every time Noah ran by his cage he barked and growled.  We visited with two more dogs.  But didn't find our perfect boy or girl today.  We are going to take our time to find a good match for our family.  My "Nana" is out there somewhere!

Adventure #14: Get the Hunt Family Christmas Tree!

Every year we drive out to the country to cut our own tree down.  This involves a long drive in fog that wasn't there when we left the house but is now so heavy I am worried we are going to drive off the road.  Each  Christmas tree farm just doesn't "feel right" to Geoff, so we pass countless ones until he finally settles on the farm that has whatever magical combination of attributes he needs.  Mine just need trees for sale, I still have no idea what he requires of his.  We all get out of the car and find ourselves ankle deep in mud.  Noah refuses to walk  because the ground is uneven and its cold.  So I carry my 50 pound child while we troop around the farm.

Just like Geoff requires some unknown formula to stop at the "perfect" Christmas tree farm, there is also some combination to create the "perfect" tree.  As my hands are falling asleep and my back is killing me hauling Noah around we look at trees.  We find countless ones that seem great to me.  But somehow they just aren't "right" to Geoff.  We continue with him pointing out trees, me saying, "let's get it", and him deciding its just not "quite right".  We keep looking as I am getting more short tempered by the moment.  Finally, after a good 20 minutes the tree is selected.  Oh, the joy of a U-Cut, Geoff realizes he is going to have to lay in the mud to saw down the tree.

Once we get the tree to our car we are forced to acknowledge that it will not fit in the back of our small SUV.   Even if we had remembered to remove Noah's push car before we left the house. Another 20 minutes pass us by while Geoff wrestles the tree onto the roof.  After many swears and some cut up hands, we are ready to take the treacherous foggy path back home.

Once home the real battle begins.  Our standard operating procedure is Geoff trying to screw the tree into the stand while I hold it steady.  Geoff lays under the tree while critiquing my holding of the tree.  He likes to argue that the tree isn't straight.  At this point my holly jolly holiday mood is gone replaced by something much crabbier.  I have to say (yell), "HOW CAN YOU TELL IF THE TREE IS STRAIGHT!?  YOU ARE LAYING UNDER IT!"  After far too long we have the tree up.  At this point decorating the tree while listening to carols and sipping hot cocoa is far from my mind.

I had been thinking maybe it would be OK to let go of the Christmas tree farm experience.  Last year after the tree collapsed on me and I was stuck until Geoff got home from the store. I decided I really am done with the tree farm experience.  Honestly it is a hassle we don't enjoy.

This year we packed the kids into the car to get our tree.  We drove 5 minutes on a blissfully fog-free street to our local Target.  Putting Noah in the cart we strolled through the store and browsed the ornaments.  We looked at their lovely assortment of trees while we were warm and I wasn't holding a heavy child.  Picked out our tree, conveniently boxed small enough to fit in our car even though we again didn't remember to remove Noah's push car from our car.  It is also light enough for Owen to carry it.  Erecting the tree took 10 argument-free minutes.  Forever I have fought the artificial tree.  But I am now a convert.

What is Sensory Processing Disorder? Or why is Noah so "hitty"?

Anyone who has spent time around my little Noah has experienced him throwing himself on you, biting or hitting you.  You have probably seen his odd choice in toys: sand, dried beans, anything he can fill and dump (and throw).  These are more than just naughty or quirky behavior.  Noah has sensory processing disorder in addition to his other diagnosis.

 Most children with Sensory Processing Disorder are sensory avoiders, the kids who won't walk barefoot on grass or eat food with a certain texture or can't stand the seam on their socks.  Noah experiences some of that, but he is mostly at the opposite end of the spectrum, he craves sensations.  This is a disorder that is difficult to explain, below is excerpts of an article by Beth Arky of the Child Mind Institute that I think does a pretty good job explaining sensory processing disorder.  (here is a link to the entire article http://www.childmind.org/en/posts/articles/2011-10-26-sensory-processing-issues-explained)

At first, SPD parent blogger Hartley Steiner couldn't understand why her son Gabriel's psychologist suggested that he had SPD; after all, he didn't fit the avoidance profile most people think of when they hear "sensory issues"—kids who cover their ears or won't try new foods. As she wrote in her blog, Gabriel was "fine with loud noises, loved water, mud, hot salsa," Steiner says. "He would climb to the tippity top of a play structure—and stand on top of it. No, my kid was not at all adverse to sensory stimuli—as a matter of fact, he couldn't get enough."

It took a year, and reading Carol Stock Kranowitz's seminal book, The Out-of-Sync Child, for Steiner to realize there are two types of kids with SPD: sensory seekers and sensory avoiders. Those like Gabriel, who seek input, "are often considered 'behavior problems,' 'hyperactive,' 'difficult,' 'stubborn,' 'coddled.' Many of us parents have been blamed, told our kids need more discipline, or that they are 'in need of a good spanking.'" Those who perceive things too intensely are avoiders; this can translate into refusing to brush their teeth or have their faces painted. To make things even more complicated, kids can be both seekers and avoiders and have both proprioceptive and vestibular challenges, along with issues relating to the traditional five senses.

Proprioceptive receptors are located in the joints and ligaments, allowing for motor control and posture. The proprioceptive system tells the brain where the body is in relation to other objects and how to move. Those who are hyposensitive crave input; they love jumping, bumping and crashing activities, as well as deep pressure such as that provided by tight bear hugs. If they're hypersensitive, they have difficulty understanding where their body is in relation to other objects and may bump into things and appear clumsy; because they have trouble sensing the amount of force they're applying, they may rip the paper when erasing, pinch too hard or slam objects down.

The vestibular receptors, located in the inner ear; tell the brain where the body is in space by providing the information related to movement and head position. These are key elements of balance and coordination, among other things. Those with hyposensitivity are in constant motion; crave fast, spinning and/or intense movement, and love being tossed in the air and jumping on furniture and trampolines. Those who are hypersensitive may be fearful of activities that require good balance, including climbing on playground equipment, riding a bike, or balancing on one foot, especially with eyes closed. They, too, may appear clumsy.

Peske sums up the way sensory issues can affect kids this way: "If you're a child who is oversensitive to certain sensations, you are not only likely to be anxious or irritable, even angry or fearful, you're likely to be called 'picky' and 'oversensitive.' If you rush away because you're anxious or you're over-stimulated and not using your executive function well because your body has such a powerful need to get away, you're 'impulsive.' If you have trouble with planning and executing your movements due to poor body awareness and poor organization in the motor areas of the brain, you're 'clumsy.' Because you're distracted by your sensory issues and trying to make sense of it all, you may be developmentally delayed in some ways, making you a bit 'immature' or young for your age."

See, Noah isn't a jerk!  Noah's sensory issues are his most exasperating behavior for me.  His behavior gets defined as aggressive which makes spending time with peers extremely difficult.  Time with peers would be incredibly helpful for him, but he is too "hitty" for other kids to want to play with him.  Hopefully with continued therapy and time at school these sensory issues will lessen or at least manifest themselves in another, more socially acceptable, way.  Unfortunately this isn't an issue with a quick fix.  But we will keep working on it.  Our outings are one way we hope will help him learn to control his impulses and learn to manage himself in public.  Wish us luck!

Adventure #13: Giant SpongeBob Lego Build

All this weekend at Washington Square Mall, the Lego Store is hosting a free mega building event. http://www.shopwashingtonsquare.com/events/Details/40661  If you have ever been to downtown Disney, the Lego Store at that location has giant Lego creations of Darth Vadar, animals, and the like.  Our local Lego Store is getting their own 8 feet tall Sponge Bob Square Pants and you can help.

As the kids had no school on Friday, we headed down to participate.  Now this isn't really Noah's thing, he lacks the coordination to build with Legos.   He'd really rather just throw them.  But Owen, at 7 years old is a Lego fiend, so this was really for him.

This free event is really well organized with several tables set up by the food court (where Santa will be in about a month).  At each station are different colored bricks and Lego personnel walk around to instruct the kids how to turn their small bricks into a giant brick to assist in building Sponge Bob.  Geoff and Owen got to building while Noah and I cruised the mall.

Most stores, although they may technically meet ADA standards, are way too tight for me to get Noah through with his stroller.  Build-A-Bear Workshop is a nice exception.  Noah does love a stuffed animal, so we walked around in there.  I kept petting his cheek with different stuffed animals for which I was rewarded with sweet smiles.  We then found some pink monkeys that he decided he needed 3 to join him in his stroller. Like he literally kept pointing and grunting until he was at 3 then satisfied, he allowed me to move on.  We then found cute little "Woodstock" dolls from Peanuts that sang the Peanuts theme song.  Noah wanted 2, but when I showed him Charlie Brown he gave all the other toys back to have Charlie.  So decision made we paid and decided to walk around a little more.

When did Washington Square Mall become a Middle Eastern Bazaar?  All the kiosk shop keeps are shouting  at me to try their products and a Shakira look alike nearly chased me down the mall.  Weird and unpleasant.  We walked around for a few more minutes then went to rejoin Owen and Geoff.

Owen proudly holding his certificate for participating in a Master Lego Build was very happy with his contribution to the giant Sponge Bob.  We got some lunch.  Owen and I some Mexican, Geoff Japanese, and Noah an odd mishmash of tater tots, yakisoba, and cinnamon crustos (the worst possible name for a food item).  We finished up and headed home.  Now we just need to go back on Monday to see the finished Sponge Bob!

Adventure #12: The pumpkin patch

We are finally all healthy at the same time and ready to go on an outing!  As Halloween approaches a trip to the pumpkin patch was in dire need.  We headed back to LakeView Farms http://www.thelakeviewfarms.com/.  LakeView Farms is located in North Plains and I think it is the only thing located in North Plains besides the McDonald's by the freeway.  We went there 2 years before with friends and it was overwhelming.  Noah was out of control and it was insanely crowded.  We went by ourselves and mid week this year to help Noah hopefully have an easier time.

When you get there you drive down a long dirt road to the gift shop.  Right next to the gift shop is a petting zoo with some pigs, goats, bunnies and cats (?), literally kittens in a cage, don't know why.  After purchasing our train tickets we headed over to take a ride on the rails.  I didn't know how Noah would do.  When we came two years ago he spent the train ride punching me in the head.  This year we got into our seat and Noah kept trying to climb out, not a good start.  But after the train got going he sat next to me with a sweet little smile on his face.  It made me think a trip to Disneyland may be in our future!  But really everything makes me (or my sisters) think a trip to Disneyland should be in our future.

We disembarked at the pumpkin field and Owen proceeded to grab a wheel barrow and load it up with pumpkins.  Geoff leaned over to me and asked, "are we getting all those?"  I had to reply, "no, we are getting one but it makes him happy to load up the wheel barrow."  Noah, true to form, refused to walk on the uneven ground of the field.  So Geoff and I alternated carrying his chubby self until he decided to climb into a wheel barrow and got big brother to wheel him around.

LakeView Farms has a train and a boat you can take.  We have never taken the boat ride.  Owen is a little nervous of the boat and Noah has no understanding of personal safety and a love of water that just reeked of a bad combination.  We took the train back.  The train engineer, who was a very nice man, asked Owen why he didn't want to take the boat.  He then asked Owen what he was going to be for Halloween.  Owen answered a pirate and I thought about the irony of a pirate who hates boats.

We paid for our Cinderella pumpkin, which Owen told me was definitely not a Cinderella pumpkin and stared at the animals before heading to our car.  Nice little outing to the pumpkin patch.  Noah was calm and happy, Owen got to go to his favorite pumpkin patch and we just barely dodged the rain.  Perfect.