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This weekend, the Siena Saints basketball team is playing a game under “sensory friendly” conditions. On January 5, the University of Albany Women’s team is doing a similar promotion.

A sensory friendly event, whether it be a sporting event, a  movie or a concert, involves reducing sound volume, sometimes dimming lights or eliminating light shows and tailoring promotions to people who prefer less stimulation. The Siena event also has a quiet room for people who want to reduce stimulation even further.

For neuro-typical people (people who don’t live with a disability) these events may seem strange. We’ve become accustomed to flashing lights, over the top announcers and blaring stadium rock music. You may or may not like all the commotion but, even if you don’t like it, you can still tolerate it.

For some people tolerating it is far more challenging. For parents of people who struggle with excess stimulation it often means not being able to experience sports, movies and other events. When you’re child’s discomfort overrides any enjoyment it makes more sense just to stay away.

Staying away brings with it the isolation that we are trying so hard to rid  in our society. If someone can enjoy an event under special sensory conditions might they then want to try it under the usual conditions? Perhaps, and with work, practice and the patience of a more accepting community, that has a better chance of happening. If not, then the sensory friendly event can still be an enjoyable time out.

So often, all a person needs is an invitation, some exposure and some time to experience and process things. Our society has become more tolerant and more and more people are becoming aware that not everyone has the same experience.

Sensory friendly events really help.

 

Tom Schreck, Director of Communications, Wildwood Programs

The Holidays can be days of wonderful family time filled with magic and happiness. They can also be a time filled with uncertainty, unpredictability and confusion.  Lights, meeting with Santa Claus and visits from once-a-year visitors, make for days out of the ordinary and, for some, days out of a much needed daily structuring.

The Autism Society offers tips to help people and families impacted by autism navigate through the holidays. They are no guarantee that following them will bring peace to all, but applied with  patience, they may help keep unhappiness to a minimum.

Preparation is crucial. For children who get anxious with too much lead time, preparation may involve just a day’s notice of what to expect, for others, it may be that the more time the better. Preparation can include social stories, photos of decorations and even photos of who will be attending. Spend some time thinking about what works best with your family member.

Decorations aren’t fun and welcome for everyone. Gauge how your family member responds to the changes shiny garland and a bright tree can bring.

“Lights that stay on continually are generally  more calming than blinking lights,  and traditional lights more calming than the LED style,” Bonnie McKeown, Wildwood School, occupational therapist said. “Have your child participate in making decorations and hanging them on the tree to encourage their enjoyment of the process.

If change is the biggest issue, consider decorating gradually and involving the family member each step of the way. Letting them know what is coming the next day can go a long way to preventing troubles.

When a child begins to obsess about a specific gift they are hoping to get, setting very specific boundaries about how often they can ask might be a necessary boundary. Keep it clear and specific so there’s no guess work and then stand firm.

Santa visits can be great fun if planned.

“Visiting Santa is a treasured tradition for many.  Sensory friendly and special needs Santa visits occur all over the country.  Check the Autism Speaks website for particular locations,” Bonnie said.

Have a plan for when an event gets overwhelming and have a plan for being able to leave such an event. Check in with your family member, give them specific options and talk about them ahead of time so if a crisis occurs no one will be caught off guard.

“Your child may need to take more frequent breaks from activities that are out of their routine.  Even a few minutes in a quiet space, with low lighting and/or relaxing nature sounds or music can provide a needed respite and allow your child to be able to return to and fully enjoy all the season has to offer,” Bonnie said.

The holidays often involve travel. Remember to bring along the things that comfort and soothe. Keep that device charged, make room for a favorite toy or book and reinforce things that are comforting.

If your family member has dietary restrictions make sure there is always appetizing food available that they can eat. Bring their favorites and make it special in case others get to have the foods they can’t eat.

Involve the whole family as a support during these times and make sure the whole family, young and old, know the plans. Strategizing ahead of time will be time well spent and may save time and distress in the long run.

Here's some holiday gift ideas for children with special needs along with links to purchase them on Amazon.

 

Gifts Providing Olfactory Stimulation

Scented markers/crayons

 

Gifts Providing Auditory Input

Musical toys—Keyboard Play Matt

 

Gifts providing Tactile and Proprioceptive Input

Fidget toys

Weighted blankets

Moon Sand

Body Socks

 

Gifts Providing Calming Visual Input

Color mix tubes

 

 

By Nancy Zipprich RN, residential nursing staff

Sometimes in this field we make assumptions that luckily the individuals we support disprove.  Don's story is one such case. His story can teach us all to never underestimate what individuals can achieve with a little support and caring from all of us. 

Don is a 73 year old gentleman who resides by himself in our supportive apartment program.  His ever present smile and humor, his warm, calm manner and gentle spirit immediately come to mind when you think of Don.  When you meet him, he will bring out his magazine and show you the article about Jerry Lee Lewis, the famous musician who is his first cousin and tell you about his colorful past but also about the time Jerry Lee recognized Don’s Mom in the audience and brought her backstage to spend time visiting with her.  He loves the old shows like Gunsmoke, Andy Griffin and Bonanza, which he watches on his free afternoons at home and can relate many stories about those stars as well.  Three or four days a week, Don can be found at Guild Care Senior program where he is a favorite to all around.  On Wednesdays and Thursdays, you will find Don shopping, cleaning, and going on appointments with Rich O’Neill, who is Don’s staff, but more that that, Don’s strongest advocate and supporter.  In nice weather, you can find Don walking to the local ballpark to watch the games and collect returnables, which he then brings to local grocery stores to return - walk fast, though, or you will never keep up with him. 

Don is a diabetic and steadily over the years, his A1c (a lab test which shows what his average glucose level is in the blood over a three month period) has climbed.  Oral medication was started and with some lifestyle changes, his diabetes stabilized for a while, but then started to climb again so dual therapy or two combined oral diabetes medications were needed.  Time passed, though, and Don slowed down a little as he got older, gained a few more pounds and his A1c started climbing again.  In June of 2017, his A1c had climbed so much that a more aggressive approach was needed.  Insulin requiring night time injections was recommended.  This had been discussed previously, but the team, including Don’s doctors, were not certain that Don could do this with his current living arrangements.  Don, however, when presented with the health concerns and his current health status, said “Okay, let’s try this” and we did, even though he did express that he was nervous.  Each evening for the next week, I would go over to Don’s apartment and help him learn how to do his injection.  Within three days of my doing it for him and demonstrating each step while explaining it, Don was ready to attempt it himself, which he did with amazing skill.  Before two weeks went by, he was ready to do it on his own and I felt confident in his ability. Now, he will tell you it’s “a piece of cake”.  His A1c improved significantly for awhile.

During the winter, Don tried to get his diet more under control and increase his exercise, but not as aggressively as he could have, and once again Don’s numbers started to climb.  

In the spring of 2019, a lesion was found in Don’s bladder and surgery was needed.  In order for this to happen, Don’s A1c had to be lowered to a safe enough level. Understanding the seriousness of the situation, Don made a determined effort to change his eating habits and get moving.  Despite all Don’s efforts though, we knew we needed a more aggressive and quicker approach to get him to a safe place for a much needed surgery and meal time insulin coverage was the plan.  Once again, Don rose to the challenge and with a determined grin, did his finger sticks three times a day, following with his insulin injection and he quickly learned his sliding scale.  He would call to verify with us, but within a few months, he even understood his sliding scale. By April, Don was ready for his surgery, which went well with a positive outcome.  

Don continues to be monitored closely as his bladder cancer can recur, but with a currently his diabetes is well controlled.  Don has become the model patient and achieved the trifecta in the world of diabetes:  well controlled blood sugar with finger sticks, less than 110 more than 70% of the time, well controlled blood pressure, normal cholesterol counts and a 20 pound weight loss.  Time and again, Don has risen to every challenge and learned the skills needed to maintain his health in ways we had assumed would be beyond his capabilities.

The moral of this story:  Never, ever underestimate what individuals can achieve with a little support and caring from all of us. 

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By Tom Schreck, Director of Communications

The holidays can be days of wonderful family time filled with magic and happiness. They can also be a time filled with uncertainty, unpredictability and confusion.  Lights, meeting with Santa Claus and visits from once-a-year visitors, make for days out of the ordinary and, for some, days out of a much needed daily structuring.

The Autism Society offers tips to help people and families impacted by autism navigate through the holidays. There is no guarantee that following them will bring peace to all, but applied with patience, they may help keep unhappiness to a minimum.

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