April 2015
IN THIS ISSUE

 

What's New at Guardian Nurses?

 

I Love a Child with Autism

Out and About

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 What's New at
 Guardian Nurses
ANOTHER  
MCC SUV  
    hits the streets!    
 
Thanks to our long-time client, Bricklayers and Allied Craftworkers Local 1 PA/DE, we 'rolled out' our third Ford Escape SUV on the local streets of the tri-state area.

The MCC SUV in front of  
Local 1's office in NE Philly.

Dennis Pagliotti, President of Local 1, and Danielle Hannings, Administrator for Local 1's Health and Welfare Fund, kicked off the Mobile Care Coordinator (TM) program with great enthusiasm.  Being mobile will enable Lynn Shookla, RN, MBA, Local 1's MCC, to visit patients in the hospital, accompany them to physician visits, and check in on them at home after they've been discharged. 

If you see one of the MCC SUV's out and about, don't be afraid to "toot and wave.' 
Out and About
This has been a busy month for the team at Guardian Nurses.  Here are a few photos from various events that we were helping out with:

Donna, Janet, Amy, and Debbie at the DC 21 Health Fair
 
Heidi and Amy at the LEHB Heart Screening

 
Right here on our Guardian Nurses' team, there are four women who are parenting children with autism.  Given the prevalence of autism now (some form of the condition affects about one in 88 children in the US), I'm not surprised that it's hit close to home.

Meet Tessa (photo below). Tessa is the adopted daughter of Amy Peterson, one of our nurses.  As Amy says, "Tessa was my 'miracle baby' as she was so very sick and had strange tone issues when I adopted her. As she approached the age of 3, it became very clear that Tessa's variations of normal were too variant and I started on a long, exhaustive search for someone who could help.It took quite some time and a lot of slammed doors. However, Tessa has blossomed into this amazing, healthy, beautiful young woman who has learned how to use everything she has learned to function as normally as possible in her world. And the parts of her that the world doesn't see as 'normal' are the biggest blessing to me because, as I tell her, God doesn't make mistakes, he just makes really special people that the world will never understand but will make all of us better people for having known them!!!"

April is Autism Awareness Month and so this month's issue of The Flame briefly addresses autism.  Though there is so much more to learn, and to know, about autism, we want to acknowledge that, every day, families come together around their child with autism and do superhuman work to raise their child in a world and a healthcare system that doesn't make it easy.

     
Betty
Betty Long, RN, MHA  

 President/CEO  

         Guardian Nurses Healthcare Advocates

Tessa and Amy Peterson, RN
 
Characteristic Behavior/Symptoms
Behaviors may be noticed in infancy but usually emerge in later childhood up through age 6. This is the time where parents often notice something is "not quite right" but aren't sure what to do or where to go for help.

The behavior is usually assessed by the child's pediatrician, often at the prompting of the concerned parent.  The National Institute of Child Health and Human Development (NICHD) lists 5 behaviors that warrant further evaluation:
  • does not babble or coo by 12 months of age
  • does not gesture (point, wave or grasp) by 12 months
  • does not say single words by 16 months of age
  • does not say 2-word phrases on his/her own by 24 months
  • has any loss of any language or social skill at any age

Diagnosis

What makes the diagnosis of autism spectrum disorders difficult are the many normal variations of development in children. Your child may have some of these behaviors but does not have the diagnosis of autism. The diagnosis requires a multidisciplinary team evaluation.  

  

When a parent begins to pursue answers for their child for behaviors that do not seem to align with other children their child's age, the process can often be long and frustrating to get answers. But there is help and hope. There have been great strides made in autism diagnosis and treatment. 

 

Treatment

  • Biomedical treatments: these focus on medical needs, lessening symptoms through medical management, and strengthening weaker physical areas to compensate for those affected.
  • Non-medical interventions: these usually focus on one body system or issue at a time with a focus on behavioral modification or strategies to deal with the issue that can be taught to the child as they get older.
  • Adjunctive therapies: art, play, and animal therapy are examples of innovative approaches with great results for some children.
     
In some states, specific resources are available to support families with the additional costs of caring for a child with autism. In Pennsylvania, for instance, one such resource is medical assistance benefits which are available to children with disabilities.  This can become an important resource as either a primary or secondary source of reimbursement for the costs associated with care, therapy, and specialty visits.  

 

Programs vary widely by state and from school district to school district. It is important that early identification of the child's needs occurs at the level of the local school.  Assessments are conducted and a special education plan is put into place to address the child's needs and ensure an adaptive learning environment. 


Support of the entire family is the key to success for the child with autism. Seeing this diagnosis as an issue that affects the entire family gives the child the best chance for success, a healthy family, and a lifetime approach to autism that celebrates the uniqueness of the individual and recognizes both the challenges and treasures of having a loved one with autism.

Resources
Look up 'autism' on Google and you get 74 Million responses!  We invite you to visit Autism Speaks' website. Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. 


Guardian Nurses Healthcare Advocates
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