Opening Doors

From Tech Inclusion:

Another area is accuracy; accurate information is vital if you are a traveler with a disability. I have Spinal Muscular Atrophy and have very specific needs when it comes to traveling, which I communicate clearly. Yet it can still be incredibly difficult to find accessible places to stay you can trust. For example, property owners have told me their apartment is step-free, but forget about the small step up to the front door — which my wheelchair can’t ignore. My team will focus on developing new policies and features to ensure accessibility information is as accurate as possible.

And we won’t stop there. I want to make sure that accessibility is at the heart of every element of our company and our community, whether it’s accessible experiences or any other new specially adapted product.

Moreover, we’ll use our global resources to cater to people with disabilities beyond mobility, working closely with every community to ensure our platform is welcoming to as many people as possible. Lastly, we’re committed to making sure that Airbnb is a great place to work if you have a disability, and will be launching new initiatives to increase the number of applicants with disabilities.

It is a bold, ambitious agenda, and a necessary one. Even 25 years after the UN International Day for Persons with Disabilities was declared, we remain in the early stages of a tectonic shift in how people with disabilities are treated. We cannot allow another generation to pass without fundamental change. (Read more.)

Technologies to Lessen the Distress of Autism

From Behavior Imaging:

While the incidence of autism has risen precipitously in the last decade, one thing hasn’t changed much. It is still enormously expensive to provide ongoing education and therapy for autistic children. One proven treatment for autism is early and intense educational intervention. However, for many parents, that intervention is cost and/or distance prohibitive. In some areas, there are few or no options for after-school care or babysitting.

The increased incidence of autism paired with an ongoing dearth of professional resources means that families often wait for weeks or months for an appointment and must travel to the nearest major medical center for care, sometimes over great distances. As they wait for meaningful care and instruction, the family faces a host of risks.

In the paper, we said:

The constant vigilance to protect one’s child, one’s family, and one’s partner as well as one’s self can leave parents irritable and on edge indefinitely. These symptoms may cause clinically significant problems in daily social and occupational functioning, both from the perspective of PTSD and other physical and mental/behavioral health perspectives

(Read more.)

Finding a Sitter

From Healthline:

The first place — and, arguably, the easiest — most special needs parents look to is within their own families and friend groups. Trust them? Absolutely! And they work cheap! But as grandparents age, or aunts and uncles move away, it can be difficult for parents to tap into that existing network. Additionally, you might get the sense (whether rightly or wrongly) that you are “imposing.” But, honestly, if you had abundant resources for your child care needs, you wouldn’t be reading this post anyway. (Read more.)

An Autistic View of the World

From Mummy Est.2014:

I have to admit that lining things up has been something J has done so long that I can't remember when it started. It definitely wasn’t one of the first signs that concerned me. My concerns were his regression in his communication to the point where crying or laughing were the only real forms his used. He didn’t react to his name, or sounds the same as others his age, and he would develop ‘obsessions’ (it started as opening and closing doors, drawers, cupboards and you couldn’t stop or face a day long meltdown). Once he spent 15 minute opening and closing the same door in church.

J’s lining up started with lining cars up. He was very specific and would put them bumper to bumper and facing the same way. He would get frustrated if any of them were knocked or removed. When out and about he would line up sugar and sauce packets in the restaurants/café. I wasn’t overly concerned, after all that’s the way cars drive isn’t it? Following each other in a row? The problem we had was that at this point cars and vehicles was the only toys he would play with. We didn’t know how he’d react to other resources. Soon after we found he would line pretty much everything up-magnets on the fridge, stones in the garden etc. (Read more.)

The Emotional Weight of Autism

From the beautifully written blog Finding Cooper's Voice:

After almost seven years I’ve learned how to ask for help when I need it. I had too. I was drowning.  I’d been called a martyr one too many times. I’d been accused of doing it all by myself. And maybe that’s true. But in my defense, I truly believed I was the only person that could help my autistic son. I used to think that no one would ever truly take the time to understand him or decipher his needs. I thought that no one could handle his screams or hums. Or that no one would take on the burden of changing his diaper. His needs were so intense I figured it was just easier if I did it all myself. When Cooper turned six I had completely burnt myself out. I wasn’t sleeping. My back was so messed up from carrying his 65 pound body. I was anxious and irritable. I was always sick. I was drinking way too much caffeine during the day and one to many glasses of wine at night. (Read more.)

Many mothers must often leave their jobs in order to take care of special needs children, which can lead to poverty. From HuffPost:

 I’ve been asking my community of moms who have children with disabilities what they do about paid work. Many moms do work when their kids are young – this is when daycare spots for kids with disabilities are more plentiful – if they can get to the top of the long wait lists. Other moms have teenagers and have been forced to opt out of paid work. And some have flexible employers – although these types of employers are sadly the exception. Yet others piece together a freelancing life, picking up work here and there, like I do now.

Many families slowly inch their way towards poverty. We bleed money every month. Ironically we need a higher income even more than we did with any of our other kids. We pay for our son’s therapies out of pocket and we need to save for his adulthood because of the abysmal government rates of disability assistance that loom in his future.

“I left my job I had for 20 years when my son started high school, too,” one mom told me last week over coffee. When he was younger, they had cobbled together care with grandparents, but their son’s needs became more pronounced when he hit adolescence and the grandparents inevitably aged – the arrangement no longer worked. So the mom had to resign. (Read more.)

Special Needs Homeschooling Myth Debunked

From the iHomeschool Network:

We have been homeschooling now for five years. We began before we had a single diagnosis for either of my boys, largely because school was a very difficult place for my oldest son. (Think sensory overload and bullying, mixed with a healthy dose of anxiety and you have an idea of what it was like for him every day – not good.)

A year after we began homeschooling, he was diagnosed with autism and generalized anxiety disorder. A year later, we learned his younger brother is profoundly dyslexic and has ADHD. In both instances, I was asked if, now that we had the diagnoses, I would be putting the boys back in school. There was an assumption that because my children now had identified “special needs”, we would need the “experts” to take over their education. 

The truth is, although I was a little overwhelmed with all the needs, I also felt even more certain that a typical school environment would not accommodate my children’s learning differences. (Read more.)

Kevin and Martin Receiving Gifts!

Kevin

Kevin and Martin of Emmaus Home are recipients of the Christmas Giving Tree at Nativity of the Blessed Virgin Mary Parish in Media, PA! We wish to thank Fr. Bell and his parish for this great honor!

To help our work with God's children at Emmaus Home, please donate HERE. May the Lord reward with eternal life all who do good to us in His Name.

Martin

The Dangers of Wandering

From TC Palm:

It’s difficult, Naeder said, to pinpoint the exact reason children with autism wander away from their homes, schools and other safe places. Autism is a spectrum disorder, which means symptoms and behaviors can vary widely. But it’s worth examining potential causes so families can watch for triggers. “It could be a person with autism is seeking something,” Naeder said. Perhaps a special item or favorite location. “Or, as a result of their autism, they could be fleeing from something,” she explained. Maybe a loud noise or bright light.That also can make search-and-rescue missions challenging. Children with autism might run away from the sound of police vehicles or helicopters. If they are nonverbal, as Chelsea was, they might not be able to respond to someone calling their name.

Though the causes of wandering are not clear, the prevalence of such behavior is documented. A 2012 study funded by Autism Speaks showed almost half of parents who have a child with autism said their child had tried to bolt from a safe, supervised place. Those were only the reported cases of wandering, so there’s a good chance the actual numbers are larger. “We’ve heard reports of parents sleeping in front of the door … it’s an incredible stressor on the entire family,” said Naeder, a social worker who has an adult brother with autism. The prevalence of autism in the U.S. means it's worth educating not just families who are directly affected, but our communities as a whole. One in 68 children are diagnosed with autism, according to the Centers for Disease Control; about 3.5 million Americans are living with the disorder. (Read more.)

December 2017 Newsletter

Our new Day Program is located at 2989 Dutton Mill Road, Aston, PA. It is the perfect location and a beautiful space for our participants. After waiting for its completion and meeting in parks, libraries and nature centers for several months,we are very excited and proud to be in our new program’s home. It features professional administrative offices, reception area and conference room. The ABA compliant facility has a computer lab, kitchen and ADL training area. A bright and spacious creativity area facilitates our Art, Music, Crafts and other group activities.

We now have two residences: one at 601 Vernon Street in Media, PA, and another at 1519 Black Rock Road in Swarthmore PA. They are beautiful, well-appointed homes in safe and welcoming communities. The Media home can house 3 residents with our wonderful house parent, RoseAnna Yap, who has a master's degree in special education from the Philippines, and the Swarthmore home is the residence of two adults and our newest houseparent, Dr. Rafe Martinez Arrue, with a PhD in psychology. The Franciscan Sisters have welcomed the participants of our Day Program to their Tuesday Afternoon Bingo. Every week our guys gleefully yell out their number or “bingo” and the regulars lovingly cheer them on.

Our Advent Season began with the generous gift of Christmas trees from Schmidt's Nursery and Linvilla Orchards. The Christmas trees were duly erected and decorated in Marty and Kevin’s home, the Day Program, and in our Media home. All of our men love Christmas, but Kevin goes crazy over Christmas trees. And the trees were particularly beautiful.

We are having an open house ribbon cutting ceremony on December 15th. We invite everyone to come and join us for beverages and snacks. And join us for our Wednesday Morning Coffee House from 10:00 to 11:00 beginning on December 13, with fresh coffee, donuts and pastries.

Attention Problems

From Spectrum News:

Young children with autism are no more likely than those without the condition to sustain injuries that require medical attention, according a study of more than 2,000 children¹. However, injuries are common among children with attention problems. About 30 percent of children with autism meet the criteria for attention deficit hyperactivity disorder (ADHD). “Attention problems do appear to contribute to injury risk,” says lead investigator Carolyn DiGuiseppi, professor of epidemiology and pediatrics at the Colorado School of Public Health. “That existing relationship may explain why some studies have found a higher risk of injury in children with autism.” Some studies have reported that children with autism are at increased risk of injury, perhaps because of their behavioral or motor problems². But others have refuted that link³. (Read more.)

Scenery Before Sleep

From Autism Works:

The way my head works and what helps me go to sleep is that I want to see a beautiful image of some sorts so I can keep that image in mind.  It’s like seeing the City of Seattle and it's the last thing I want to see before shutting my eyes tight. I don’t do this every time I go to sleep, but sometimes, even today, if I have trouble sleeping I would want to see something gorgeous.

Sounds and music tunes help me sleep too. The realistic scenery is something I’d love to hold on to my eyes until I fall asleep. Ever had a scene you just want to keep for a long time? To me, I think that’s how great dreams come into play is the amazing thoughts we have during sleep. (Read more.)

Horrendous Meltdowns

From the BBC:

Lorna Lynch is one of a growing number of parents home-educating a child with special needs. In the last five years, their numbers have grown by 57% across England, Wales and Northern Ireland. Almost a thousand children with recognised needs are waiting for a school place. Ministers in England say they're investing to improve the system. For the past year, 11-year-old Emily has been educated at home, with extra educational activities arranged by her mother Lorna. Emily has been diagnosed with autism and ADHD, and is now on medication to manage anxiety. Home-schooling was a decision Lorna Lynch reached reluctantly after her daughter struggled to understand both lessons and other children's behaviour. "I couldn't cope with her going to school and then coming back with her so stressed out, so angry at me."

Emily found school confusing and overwhelming. "I want to learn things that I'm interested in - but it's like I can't learn anything because I don't know how and they don't tell me how." She would become angry and lash out at other children. "The meltdowns were horrendous," says Lorna, who tried three different schools before deciding to home-educate. (Read more.)

Ribbon Cutting, December 15, 2017

"I Will Sit With You In The Dark"

From Finding Cooper's Voice:

And then we had the piece of paper. The spoken words from the Psychologist. Our child was autistic. And at the time, my world stopped. In an instant my world changed forever. Or at least it felt that way. I immediately wanted to fix everything and do nothing all at once. I felt the weight of his diagnosis on my shoulders and still to this day, almost four years later, it is still securely on my back.

I have a hard time looking back at pictures from when Cooper was three. Which makes me so sad because I have two beautiful boys. Look at this picture. If you live autism you probably notice that Cooper is in motion. Always in motion. You also most definitely notice that he is pushing away from me. I have a smile on my face. What you can’t tell is that I’m covered in sweat. I am dying inside because we were at a public event and there was no denying that my child was different. My child didn’t speak. He didn’t play. He didn’t sit or even walk. He ran. He screamed. He was full of anxiety.

I spent days crying after this picture was taken. This was one of those moments that you hear about. And I’ll never forget it as long as I live. (Read more.)

A Common Autism Parenting Myth

From The Autism Site:

You may have heard the shocking and sobering statistic before: up to 80 percent of parents who have an autistic child end up getting divorced. Many parents describe learning of this in addition to their child’s autism as somewhat of a “double diagnosis.” That is, the child and family are both going to face unique challenges, and the marriage between Mom and Dad is all but doomed to fail. This can cause incredible stress and can be disheartening.

If you’ve heard this 80 percent divorce rate statistic and have ever worried about it, rest assured; that wicked high statistic has no basis in fact whatsoever. It is an urban myth that has nevertheless persisted, despite the fact that studies have debunked it.
We’re here to tell you what science has actually discovered about this subject…as well as what you can do to strengthen your relationship with your spouse. (Read more.)

Cooking with Autism

From the Autism Awareness Center:

Processing information is difficult for people with ASD so recipes need to be broken down into manageable parts:

• First, list the utensils and appliances needed.
• Then list the ingredients in their full form, not the way they need to be put into the recipe (ex. rather than say diced, peeled, sliced etc., say one carrot, one apple etc.)
• Now list the instructions and break them down into manageable steps. Yes – there may be 3 pages for a recipe, but there is also the chance for cooking independence which is the goal.

How do you handle food aversions and other eating challenges? Find something similar to something they already like. If a child likes spice cake then try carrot cake. Often an aversion is not to the taste of the food itself but to some other aspect such as presentation or texture. I love eggs but will not eat them poached or soft-boiled because I hate the texture of a soft yolk. I do enjoy them scrambled. (Read more.)

Establishing Autism Diagnosis in Young Children

From EmaxHealth:

Parents and close family members tend to be the first people to notice behavioral differences and developmental delays in children. However, teachers, babysitters, doctors and others can also notice the symptoms that indicate autism and suggest testing. The first step is to pay attention to the behavior and development of the child, so this information can be shared with a professional. Parents are hesitant to consider that their child may have autism, yet it is important not to wait too long for testing because delays in diagnosis should be avoided. If the child is diagnosed at an early age, many symptoms could be mitigated with behavioral therapies.

There are several tests available to help diagnose autism. The Modified Checklist for Autism in Toddlers Revised (M-CHAT-R), Screening Tool for Autism in Toddlers & Young Children (STAT) and the Social Communication Questionnaire (SCQ) are several examples of the tools available to professionals. According to clinical psychologist Dr. Tali Shenfield, testing for autism can reveal other psychological conditions, so parents should not hesitate to do the evaluations.

Researchers have not reached the point that allows a doctor to use a blood test or another type of physical examination to detect autism in a young child. This is why it is important to take advantage of the existing psychological tests and find a qualified professional to conduct the assessment. The tests are not invasive and do not require a great amount of time to be spent in a medical office. They generally consist of multiple questions that are used by a psychologist, psychiatrist or other qualified medical professional to evaluate the likelihood of an autism disorder in the child. (Read more.)

No Pity, Please

From Without a Crystal Ball:

Listen, I’m ok with people that want to pray for us, ask questions about our journey, but I’m not ok with people feeling sorry for us. I have never, ever felt sorry for my son. There are days I am frustrated that he has to go through so much difficulty in his development. Other days I may feel emotional about the diseases that are ravaging his body, but I never actually feel sorry for him or pity him. In the past five years, this child has taught me more about human resilience and love than anyone has in my entire life. I watched him sit on life support clinging to life, and I watched him beat the odds and survive a critical illness. As he grew, we were told all about the limitations he would experience by all the professionals. Doctors said he would likely have significant learning disabilities, developmental delays, and they weren’t confident he would ever talk. In the early days, professionals classified him as cognitively delayed, and therapists weren’t sure he understood anything said to him. None of those things were ever easy for me to hear, but none of that ever stopped me from pushing him to learn and succeed. (Read more.)

Safespaces & Sleep

From the Autism Directory:

The Safespace has helped George’s bedtime routine. Prior to the Safespace I would have to settle George which took anything from one to three hours & sometimes failed altogether! Whilst I was settling George upstairs it left my older daughter Lucy (13) downstairs on her own for long periods of time. However, with the Safespace, bedtime is a very different experience! We can put on the sensory equipment & just sit quietly next to George & hold his hand & he will generally fall asleep within 30-45 minutes snuggled up in a relaxing, calm & safe environment. In the three short months we have had the Safespace we have seen huge improvements with George & our whole family. George settles much better & is increasing his independence at bedtime. (Read more.)

Autism and Thanksgiving

How to cope. From Autism Speaks:

 When Turkey Day arrives, here are some general tips for enjoying a holiday meal with a child or adult who has autism:

* Dress comfortably. This probably isn’t the best time for your son to wear something new or different – especially if this has been an issue in the past. (Pick your battles.)

* Talk with your family about keeping conversation, music and TV volume at an appropriate volume. This may be difficult if your family is anything like mine. Another option is to have your son use noise-reducing headphones – either alone or with some music he enjoys. Wearing headphones may not be appropriate for the entire day. But it can be very useful when you sense that your son is becoming overstimulated.

* Create a quiet room where your child can retreat and relax while waiting for the big meal. This is a great place to keep a bag of your son’s favorite toys, books and other independent activities.

* Most importantly, remember to catch your child being “good” – that is, playing, socializing or eating in an appropriate and healthy manner. Be sure to provide plenty of positive feedback. You know what your son likes – be it praise, a hug or a small reward such as a sticker or favorite toy. I understand that it can be hard to remember to reward a well-behaving child while you’re juggling the demands of preparing a holiday meal. Consider having a kitchen timer in your pocket or set your cell phone alarm as a reminder to touch base with your child and provide that positive feedback before disruptive behavior occurs.

* Consider minimizing table décor, including scented candles. Remember, the day will be filled with the savory and sweet aromas from all the delicious food you’re preparing. It can help to reduce other sensory input at the table.

* If you’re worried that your child will gorge on snacks and appetizers prior to the meal, consider moving these treats out of sight or under cover. You may need to enlist the help of understanding family members. For example, consider placing the appetizers in one place in bowls and platters that have covers. Ask family members to take turns monitoring the “snack zone” and assist children with appropriate portions.

* Once at the table, you can help an over-excited eater slow down by placing small portions of food on his plate. You can always serve seconds.

* If your son has difficulty controlling his impulse to grab food, consider sitting him immediately next to you or someone else who can provide support and reinforce appropriate table manners.

* Another option – if the family is willing – is to plate food in the kitchen rather than pile the table with serving platters. This avoids grabbing and encourages more of a pause between servings. (Read more.)