Disabilities

Finding the right autistic daycare can be quite a task. Caring for the specialized needs of children with autism is not a responsibility for the retiree down the street or the teen looking for a summer job. Daycare providers must have working knowledge the disorder and they need to be experienced in handling its symptoms in order to deliver the social, behavioral, educational, and emotional support that is mission critical for many children with autism to thrive.

FIRST STEPS

 

COME TO TERMS WITH THE DIAGNOSIS.

If you are not comfortable, ask for a second opinion. Don’t be concerned about stepping on anyone’s toes.  This is far more important than that. It’s important that you’re comfortable with the diagnosis. Talk with other parents, conduct your own research.

 

REMEMBER, FROM YOUR CHILD’S POINT OF VIEW, NOTHING HAS CHANGED JUST BECAUSE THEY WERE DIAGNOSED.

 

Now, however, you will be better equipped to cope and to be aware of your options to try and minimize the negative aspects of autism spectrum disorder (ASD).

 

IDENTIFY THE SUPPORT SYSTEMS AVAILABLE TO YOU, AND REACH OUT TO THEM. INCLUDING FRIENDS, FAMILY AND COMMUNITY.

 

Local support groups are available virtually all over Australia. All groups are different and unique, and have their own qualities.  Don’t be discouraged if the group you chose turns out to be wrong.  Just keep searching for others.  The support groups will vary as much as the disorders themselves – from person to person.  Rest assured, you are going to find one that meets your individual needs.  Also, several online discussion groups exist for families. Share the news of the diagnosis with close family members and friends.

 

DO NOT ALLOW YOURSELF TO BE A VICTIM.  THIS IS NATURE AND YOU ARE NOT AT FAULT.

 

The cause of autism spectrum disorder is unknown, and might never be clear. Focus upon what you can do moving forward.  Don’t dwell on the past.

 

MAKE YOURSELF AWARE OF THE TREATMENT OPTIONS AVAILABLE, AND GET STARTED RIGHT AWAY – THERE’S NOT A MOMENT TO LOSE.

 

Most therapies have the greatest chance of success when they are started immediately and when the child is as young as possible.

 

IF YOU HAVE PRIVATE INSURANCE, YOU SHOULD HAVE THE RESOURCES YO NEED TO FIND THE RIGHT CARE GIVER FOR YOUR NEEDS.

Having a caring physician who shares your feelings & beliefs is very important to future success. It might be your child’s current physician. Or it might not. And if it’s not – know that it’s okay to seek someone who may be a better fit. If you don’t have that now, find it. If you need to make a change, consider referrals from friends or other parents at support groups. Parents & patients change doctors all the time – please be assured that you won’t hurt anyone’s feelings.

 

GET ORGANIZED, GRAB A NOTEBOOK, MAKE A CALENDAR.

 

Find ten minutes every evening to start keeping a journal. Record every aspect of your child’s day. What they ate, appointments, their bathroom patterns, any medication (or changes in medication), behavior comments, and your own thoughts. This information becomes incredibly valuable as time goes on.

 

 

FOR CHILDREN OLDER THAN THREE, PROVIDE YOUR ELEMENTARY SCHOOL OFFICE A LETTER REQUESTING AN EVALUATION FOR SPECIAL EDUCATION SERVICES. SHARE THE MEDICAL DIAGNOSIS YOUR CHILD HAS RECEIVED. DATE THE LETTER, AND KEEP A COPY FOR YOURSELF.

 

A medical diagnosis does not guarantee quality services at school. An educational determination is still needed. A letter from the parents requesting the evaluation starts the process, and with it, timely action is required by the school.

 

IF YOU HAVE PRIVATE INSURANCE, CONTACT THE CUSTOMER SERVICE DEPARTMENT OF THAT COMPANY TO INQUIRE ABOUT COVERAGE FOR SERVICES ASSOCIATED WITH AN AUTISM SPECTRUM DISORDER DIAGNOSIS.

 

 

CONTACT YOUR local OFFICE TO INQUIRE ABOUT WHAT PROGRAMS OR SERVICES YOU MAY BE ELIGIBLE FOR. EVEN IF YOU HAVE GOOD PRIVATE INSURANCE, THIS IS STILL AN IMPORTANT STEP.

https://www.humanservices.gov.au/customer/themes/medicare-and-your-health

 

 

 

SUPPORT GROUPS

EMPATHY NOT SYMPATHY

Australian business owners

Community Support has really stepped up in Australia, circa 2017, regarding the fostering of a respectful environment so that autistic people can be more comfortable in a public setting.  Major grocery retailers in Australia are setting aside blocks of hours during the business day in their grocery stores.  During that time, all of the mechanical “things” that make noise in a grocery store are turned off – including loud or PA talking.  All the employees whisper and a library-quiet like atmosphere is maintained for the shopping convenience of autistic as well as those with other intellectually delayed disorders.

 

Parents with children who have autistic disabilities often find themselves challenged by a set of priorities that are wholly different from those of their friends and neighbors. Your most supportive experience is likely to be with groups of people who “been there, and done that.”  With support groups, you should be looking for empathy not sympathy.

 

Support groups run the gamut of experience.  The producers of the groups can be a single person or a large insurance company or, of course, the Australian government.  It is important that you find a style, e.g., hands on participation, seminar, Q & A, symposium, key note speaker or a field trip, that matches the best way you receive information and one in which you are completely comfortable.

 

 

Tips to maximizing your support group experience:

 

  • If childcare isn’t offered, leave your child with someone trustworthy.
  • Dress comfortably.
  • Seek the advice of others, and contribute where you can.
  • Bring a small notebook to jot down ideas.
  • Remember that it’s a judgement-free zone. Share openly.

 

WANDERING

Autistic children across the spectrum usually have a wide array of challenges related to communicating and socializing.  It is important that both practitioners and care givers pay close attention to not only the behaviors but also the pattern of those behaviors.   Some autistic children will simply wander off and leave their supervision.

 

Approximately 49%, of autistic children try to flee (leave / wander) at some point.  Many never stop trying.

 

Keep in mind that these children, who can find themselves in an unfamiliar environment as a result of wandering, have no way of identifying themselves or pointing the way home.  More frightening still, an autistic child is exponentially more vulnerable to being hit by a vehicle than normal children.Children with ASD are eight times more likely to wander between the ages of 7 and 10.

 

AWAARE (Autism Wandering Awareness Alert Response Education) suggests these steps to help prevent your child from wandering away when you’re not watching.

 

Secure your home: Essentially monitor the exits of your environs.  Many of these children are secretly brilliant – so don’t underestimate their ability to figure things out.  Make sure your home/environment is failsafe.

 

Consider a tracking device: A small, GPS-style tracking chip can save valuable time in locating a missing child.

Many programs, public and private, utilize GPS tracking technology.  These products have applications that can be accessed by a cellular phone.  Given that the cell phone should be carried, the response time to an alarm is instantaneous – thus minimizing the chance of a successful wandering.

 

An ID bracelet: A medical or other identification bracelet can provide emergency contact information.

 

Involve your neighborsNeighbors may be unwilling to participate in the co-parenting aspect of child care for your autistic child, but they are typically more than willing to assist in emergency situations.  Introduce your family around the neighborhood. Circle the wagons before it’s necessary to do so.  Be especially cognoscente of homes near yours that have swimming pools.  Unattended swimming pools represent a particular source of danger for autistic children.

 

The preschool years are prime development time for all children. Growth and development that takes place during the preschool years forms the foundation upon which lifelong learning is built. For the child with autism, intensive therapy and education during these early developmental years can make all the difference in the world.

Group Daycare

Social interaction skills are a developmental area in which many children with autism need a great deal of help. A group daycare setting can certainly provide opportunities for learning or reinforcing those critical skills.

  • It is essential to choose a daycare provider that understands the social and communication issues common to autism and is well equipped to provide the support needed to acquire these skills successfully.
  • If your child requires a great deal of support and supervision in the area of appropriate social behavior, be sure to investigate details such as the teacher to student ratio and class size.
  • Smaller classes are often the best environment for children with social interaction issues, providing opportunities to learn social skills without the pressure of large, overwhelming numbers of peers on which to practice them, as well as ensuring that support will be readily available.

 

Other Group Daycare Advantages

Group autistic daycare can offer advantages in other areas as well. The transition from the relative freedom of the home setting to a structured school environment can be a difficult adjustment for any child. However, such adjustments can be especially challenging for children with autism.

  • Since children with autism can have difficulties translating skills learned in one environment to a new setting, transitions often require a great deal of support.
  • Even the most basic skills, such as toileting, can become issues in a new environment, and regression in a number of areas is quite common.
  • A group daycare setting that provides structured, educational activities can help prepare children with autism learn to handle transition from daily life at home to a more formal setting when the school years begin.

 

Home-Based Daycare Centers

Licensed home-based care centers can be a great option for autistic daycare services, especially for children who have difficulty tolerating large groups of people due to sensory issues or social anxiety.  Keep looking, because they are available all across Australia.

  • Home based childcare venues can be just as good as professional or institution based centers – you just have to find them. The best part is that when you do find one, you will find that they are far less expensive than many similar programs on the island.
  • The primary concern when selecting a home-based daycare is their experience with autism. Just because a family has two autistic children does not qualify them to be adequately responsive to the myriad of needs presented by others with autism.
  • Being good with children is not even enough. In fact, the better a person is with healthy children, the more likely they are to be frustrated with the behaviors of autistic children.
  • Traditional educational rubrics that are appropriate for main-stream children are largelyineffective with autistic students, and customized behavioral based lesson-plans are often necessary.
  • Due to the variety of doctors and therapists, coordination of your education curriculum is likely to be wrought with scheduling challenges. Good luck with that.

In Home Daycare

Hiring a day care professional to come to your home can be a good option.

  • Having the child’s daily care and supervision done in the home environment, already adapted to specialized needs and sensitivities, can be the best situation for many young children with autism.
  • Therapy sessions can be easier to coordinate with a care provider who has only your child to attend to.
  • Daily, one-on-one attention can ensure strong support and guidance.
  • Choosing a provider with experience in the day to day issues of autism is important to ensure that your child receives the support needed to reach developmental goals.

Evaluating Day Care Providers

No matter which form of autistic daycare you choose to provide for your child, a safe and nurturing environment is the most important consideration of all. As you review centers in your area, consider the following:

  • Be sure to ask for and check references before committing to any child care arrangement.
  • Ask lots of questions and take notes.
  • If a day care center is to be used, spend some time visiting before you enroll your child, observing how employees interact with their young charges and the facility’s daily routine.
  • Do make some of those visits unexpected ones for a candid evaluation of day-to-day operations.
  • Speak to other parents who have had children in the center for an account of their family’s experience.
  • Most importantly, bring your child with you during the observation to see how he or she responds to the environment.

Reputable day care providers should be happy to provide you with the information you need to investigate their reputation, and local autism support groups can be a great source of information as to the best autistic day care services in your area.

 

INTELLECTUAL DELAY

What Are Strategies for Successful Supports to Parents with Intellectual Disability?

  • Services need to be responsive to the parents’ individual needs and focus on the whole family to ensure that interests of both parents and children are served.
  • Services must include long-term, ongoing supports because the needs of children change and parenting skills must change as children mature.
  • Services must consider the special learning needs of the parent. Learning must occur in the home, be repetitive, use demonstration and use resources that require little or no reading.
  • Services must assist parents in becoming part of their community.

 

What Kinds of Supports Are Needed?

Examples of supports that help parents provide appropriate care and stimulation to their children include:

  • In-home visits to teach parenting skills and to assess parenting competency
  • Parent training adapted for parents with intellectual disability
  • Help with shopping and money management
  • Service coordination
  • Health care, learning to deal with doctors
  • Child care, early intervention services
  • Mental health counseling
  • Counseling for substance abuse and other addictions
  • Basic academic education for parents
  • Transportation for families
  • Play groups for children and parents
  • Crisis intervention services

Parents may need varying kinds and levels of support at different times in their child’s life. Grandparents, aunts and uncles, friends and other family members often provide a lot of the help and support. Early intervention and/or Head Start can link families of young children to community and natural supports. However, the family may not even qualify for case management services, which means someone needs to be creative in helping the family find positive environments and help for the child. There is a great need for community service agencies to create and provide individualized services based on each family’s needs.

How Are These Supports Provided?

Several service approaches have been shown to be effective individually and in combination in supporting parents and teaching parenting skills. In-home programs provide an opportunity to model and teach parenting skills in the setting where parents will use them. This makes the skill easier for the parents to learn. The service providers can provide appropriate supports focusing on nutrition, cleanliness, safety issues and other issues related to the home.

Parenting groups can instruct families meeting together on such topics as discipline techniques, child development, health and safety issues and decision-making skills. Studies show that parents consistently gain skills in this type of instruction. They are most successful when the class is followed by home visiting. This allows parents to practice in the home what they have learned in class under the support and observation of their instructor.

Center-based programs provide a variety of services to parents and children at a program site. They can provide services to the parent and the child jointly and separately at the same site. They are most effective when supplemented with in-home training. They typically offer a variety of services and instruction such as parenting skills, cooking, financial management, etc.

Shared parenting provides full-time support when the parent and child live in foster care together. The foster provider acts as a “co-parent” to ensure the needs of children are met.

SMITH-MAGENIS SYNDROME

What is Smith-Magenis Syndrome (SMS)? 

Smith-Magenis syndrome (SMS) is a distinct and clinically recognizable genetic disorder characterized by a specific pattern of physical, behavioral, and developmental features. SMS, which was first described in the early 1980’s by Ann C.M. Smith, MA (a genetic counselor) and Ellen Magenis, MD (a cytogeneticist), is the result of a deletion of chromosome 17 (17p11.2). The chromosomal deletion occurs from a spontaneous genetic change (mutation) that happens for unknown reasons, therefore, it is not a familial disorder. SMS is considered a rare disorder and is estimated to occur in 1 out of every 25,000 live births. Currently there are over 100 cases reported, however, it is believed that SMS is widely under-diagnosed because clinical features may be subtle. It is expected that with increased awareness, the number of those identified as having SMS will increase.

Features and Characteristics

There are many characteristics associated with SMS. Not every individual has all the characteristics, however, the following is a list of traits that have been reported:

Distinct facial features: brachycephalic (short wide head), mid-face hypoplasia, prominent forehead, epicanthi folds, broad nasal bridge, pragmatism (protruding jaw), and ear anomalies
Brachydactylic (short fingers and toes)
Short stature
Hoarse, deep voice
Speech delay
Learning disability
Mental retardation (varying degrees, but have IQ’s typically in the 50-60 range)
Low muscle tone and/or feeding problems in infancy
Eye problems
Sleep disturbances
Insensitivity to pain
Behavioral problems: hyperactivity; head banging; hand/nail biting; skin picking; pulling off fingernails and/or toenails; explosive outbursts; tantrums; destructive and aggressive behavior; excitability; arm hugging/hand squeezing when excited
Engaging and endearing personalities

Less common symptoms include:

Heart defects

Scoliosis Seizures

Urinary tract abnormalities,

Abnormalities of the palate, cleft lip
Hearing impairment

Diagnosis

The diagnosis of SMS is usually confirmed through a blood test (called a high resolution chromosome analysis), which is typically performed for the evaluation of developmental delay and/or congenital anomalies. However, in the older child, the phenotype is distinctive enough for a clinical diagnosis to be made by an experienced clinician prior to the chromosome analysis.

 

NDIS

Mental Health / Mental Illness

Support Coordination