Families of Children with Special Healthcare Needs Push through a Pandemic Mountain

by Nanfi Lubogo
As the world abruptly shut down due to COVID-19, the reality of the biggest pandemic of our lifetime began to sink in. In the beginning, many treated the situation as a vacation- a “Coronacation,” they called it. As days seemed to get longer, boredom and endless Zoom conferences became the order of the day. Most people accepted the “new normal.” School districts implemented distance learning and the majority of families were able to adjust and deal with the inconveniences that arose from things we’d long taken for granted pre-COVID 19.
However, in some households in Connecticut and across the nation, isolation, anxiety, and uncertainty very quickly set in. Families of children and youth with special health-care needs had to figure out how to explain to their child that their school, activities, or programs were shut down. They could not see their grandparents and friends. Parents had to figure out how to teach their child as their special educators would, dealing with difficult behaviors, anxiety, and depression that were triggered by these sudden changes in their schedule. Parents were doing this while balancing the demands of work, either remotely or in person for those deemed “essential workers.”

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Supported Decision-Making-An Alternative to Guardianship

By Sammi Nuss (Co-Chair KASA) with a little help from one of my strongest supporters, my Mom, Ruth Nuss (Board President of PATH/FVCT)
Supported Decision-Making (SDM) agreements are something I am very excited about because they are a less restrictive alternative to Guardianship for people with disabilities who are able to make decisions for themselves, with guidance and help from people that they trust and have chosen as their supporters. Lots of people with disabilities need Guardianship because they are not able to make their own decisions and have limited life skills. There are also a lot of people (young, adult and elderly too) that CAN make decisions with just a little support, some of these currently have Guardianship, maybe because they don’t know there is an option and could be independent with an SDM.
Let me tell you my story:
When I was in my senior year of high school, I was nervous about graduating because I did not know what was going to happen after I left there. Our school had advised my Mom to apply for guardianship because they were worried about me and worried that my Mom would not be able to help me once I was an adult and had left school and I am sure they didn’t know there were other options.

Discovering Dyslexia

by Marni McNiff

Dyslexia, an impairment in the brain’s ability to translate images received from the eyes and ears into understandable language, is one of the most common learning disabilities in the United States. The National Institutes of Health reports that 60–80% of people with learning disabilities have problems with reading and language skills.

The exact causes of dyslexia are still not known. The International Dyslexia Association’s website states, “the anatomical and brain imagery studies show differences in the way the brain of a dyslexic person develops and functions. Moreover, most people with dyslexia have been found to have problems with identifying the separate speech sounds within a word and/or learning how letters represent those sounds, a key factor in their reading difficulties. Dyslexia is not due to either lack of intelligence or desire to learn; with appropriate teaching methods, dyslexics can learn successfully.”

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PATH’s Fourth Annual Online Auction

PATH is gearing up for our fourth annual online auction, which will take place at the end of November, just in time to do your holiday shopping! We are actively seeking donations for the auction including gift baskets, gift certificates, products, or services.

Don’t have a business and still want to help? We’d gladly accept a gift basket donation of any kind for the auction. Popular baskets from last year include a pasta basket, a doggy basket, and a basket of homemade jams/jellies.

This auction is PATH’s main yearly fundraiser and we need your support. The money raised by this auction goes directly to the many programs of parent support, advocacy, and training offered by PATH to families of children with special needs. With major budget cuts in Connecticut, we need your help now more than ever.

If you have a something you’d like to donate to the auction, please contact Auction Coordinator Marni McNiff for details at mmcniff@pathct.org.

 

 

Preventing the Summer Reading Slide

Every summer I worry that my daughter will lose the academic skills it took her all year to attain. If you have a child diagnosed with dyslexia, another specific learning disability, or attention deficit hyperactivity disorder (ADHD), I’m sure this “summer slide” has crossed your mind, too. So what’s the best way to help our children hold on to what they have learned?
Two words: summer reading. According to James S. Kim, Ed.D., assistant professor of education at the Harvard Graduate School of Education, kids who read during t he summer tend to be better prepared academically – and need less review – for to prepare for back-to-school in the fall. Your child’s school website will usually have a summer reading list. Here is also a great list from The Yale Center for Dyslexia & Creativity as well as a comprehensive list from ADDitude Magazine.

Why Oral Health is Important for Children with Special Needs & How to Access It

 

 

Parents of children with special needs may have so many doctors’ appointments that it can be easy to forget about preventive and wellness care. It can be especially difficult to focus on dental care. However, oral health is as important as physical health and, if untreated, oral health problems can result in serious complications.

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Tips to Prevent Bullying

It’s unfortunate that we hear about bullying so frequently in the media today. For parents who have children with special needs, it’s even more troubling when our kids are subjected to bullying; we may not be aware of these horrible actions until our child begins exhibiting the symptoms of bullying, which may include increased anxiety, anger, depression, and not eating or sleeping—just to name a few. Bullies often target people who are perceived to be different from others. The difference does not have to be obvious. While children with autism or kids who use wheelchairs may have more noticeable differences from others, children who have less distinguishable differences—such as a child who has a peanut or milk allergy—may also be bullied. Kids who have “theory of mind” challenges are particularly vulnerable to bullying. This arises because the child has difficulty understanding the bully’s intentions. Furthermore, autistic children have difficulty reading body language and picking up on social cues, which also increases their vulnerability.

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Transitions—Growing Up and Away

Besides starting out a new school year, for many families this fall will be a time to get ready to launch a son or daughter into the next phase of life after high school. Think with your teen what they want to accomplish. The excitement and uncertainty your child may be feeling about these next steps may be mirrored in your own feelings of pride, concern, and maybe even relief. Growth and change affect everyone!

Listen to your son’s or daughter’s hopes and ambitions.

 

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You Are Not Alone: For Parents When They Learn That Their Child Has a Disability

If you have recently learned that your child has a developmental delay or a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.

When parents learn about any difficulty or problem in their child’s development, this information comes as a tremendous blow. The day my child was diagnosed as having a disability, I was devastated—and so confused that I recall little else about those first days other than the heartbreak. Another parent described this event as a “black sack” being pulled down over her head, blocking her ability to hear, see, and think in normal ways. Another parent described the trauma as “having a knife stuck” in her heart. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents’ minds and hearts when they receive any bad news about their child.

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Building a Great Life

Building a Great Life Registration Book SERC FINAL 7-14 _Page_1

 

 

 

 

 

 

 

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