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Parents of a child with an additional need usually find the journey through life often leaves them feeling alone. They know somewhere out there, there must be someone who has been through all this before and has some advice. This is why we set up this site, here is our advice - taken from experience of having a daughter with Down Syndrome and from the surrounding communities experiences I have asked to share with me. I hope it may be of benefit. Whether your child has a mild, moderate or severe disability including developmental, intellectual, physical, sensory, learning or speech delay, each child and each experience teaches us a lot of lessons, many which we can share with the community around us. Just remember, you are foremost a parent, not a carer, and the joy of seeing your child do something for the first time is so much more rewarding as we start to understand their world just a little bit more each step. Take each day at a time and look for resources and support all around you as you really are not alone - get informed, feel empowered and be your childs best advocate.
THE JOURNEY BEGINS Whether you get a diagnosis at birth from an attending pediatrition or later in a developing childs life, such as that of Autism and Global Delay, the thought of having a child with additional needs is often more overwhelming than you can explain. For some families, getting a formal diagnosis, trying to find someone to listen to your concerns and answer all your questions can get frustrating and you feel like the treadmill will never end. For those without a clear diagnosis, your pediatrition may refer you for an official assessment or you can attend a private assessment centre if you wish. Others with a specific diagnosis like down syndrome, will usually need to go thorough the assessment process at specific milestones to clarify their needs, such as starting pre-school or school as the funding will be determined depending on what the outcome is. Once a diagnosis has been made, this time in your life can be daunting, a time to grieve about the fact that our life isn't quite what we had planned, but we can plan to get help and use the many resources around us to make sure we are all supported. Whilst going through this difficult adjustment time, most regional areas should have a social worker or a local community health centre who can direct them to an association and / or Early Intervention Group which should be able to provide immediate emotional and practical support once you get home. GETTING HELP FOR YOUNG CHILDREN WITH ADDIDIONAL NEEDS Starting Early Intervention and finding access to therapists trained in the field of your needs as soon as possible is a large key to pointing your child in the right direction - to make sure they are getting the best start to life. Many studies have shown just how essential it is that as soon as you start to notice a delay in your child's development, getting support and starting programs such as physio, speech and occupational therapy can make the world of difference. Physiotherapists can help your baby's muscle development from day one just by the way you pick up your child as a baby through to helping them to crawl, stand, walk, run, ride a bike and managing school equipment. Many have found signing or using other communication programs like PECS picture system from an early stage can give a great advantage by developing communication skills and is reccommended to most families with a young child with a speech delay. Occupational therapy will help with a young child feeding and upper body strenghtening exercises plus older children with holding a pencil, opening lunchboxes and developing efficient fine motor control. All should provide practical ways to show you how to help your child's development often through play. There are various options for how to access Early Intervention - through private centres, not-for-profit organisations, your local community centres or applying for government services through the Department of Ageing, Disability and Home Care (ADHC). Early Intervention organisations may also offer special educators who will come into your daycare, pre-school or school to assist with ways staff can help your childs education and daily needs. You should check if they may hold playgroups and age-appropriate groups which your child can bond with other children of a similar age. Different courses such as behaviour management, signing, communication and toileting programs are often held in these group settings also. Another big benefit of joining an organisation is that parents can often find these groups useful to connect with other local families and children can form play together in a comfortable setting. Once your child has a diagnosis you may be elegible to receive government services through the ADHC department. An assigned case worker will determine what services you may recieve depending on the families' needs. Phyiotherapy, Speech and Behaviour therapists can be accessed (often via a waiting list) plus fundng support is available for the carer where appropriate. If your child has been given a diagnosis of a condition where there may be an association you can join, you can often find a library, parental support groups and links to newsletters with local area events. These links can often give you broad ideas of what to expect developmentally and how to support your child in the best possible way. There may even be a toy library (to borrow developmentally appropriate toys) with occupational therapists who can direct you. Even if you have no diagnosis but are concerned that your child is falling behind in their development, there are many experts around who can help and you should ask at your local Doctors office or Health Clinic for a referral to a local Early Intervention organisation. FINANCIAL AID Financial aid can come from the government in the form of a carers allowance or payment. You can apply at your local Centrelink office to see what you are elegible for. At time of writing this, there is also addiitonal support for Autism from the “Helping Children With Autism Initiative” which may be useful. Some support for appliances may be available from PADP can be referred through your assessment centre, such as nappies if toilet training is an issue. BEHAVIOUR Behaviour differs with each child and their diagnosis. Many children with a delay can have a change in their behaviour as their communication skills may not be as good as their peers. Setting a plan for consequences and routines and making sure everyone in your household is on the same page is a great start. Your support team can usually help with ideas such as setting goals so you dont feel overwhelmed by the task in hand. What may seem like a never ending behaviour can often change if you can discover what leads up to the EDUCATION Each parent must decide what is best for their family depending on their child's needs. Young children at pre-school, long day care, family or occasional daycare centres can apply for funding through the NSW Department of education and traning's Intervention support program. State and federal departments should be able to provide funding for some aide time for your child. Typically aides are not trained special educators but rather a member of the community with an interest in additional needs, so your childs teacher needs to be the one who provides the teaching and support to the aide. Children with a disability have choices - they can go to mainstream public pre-school / daycare or school, a special class within mainstream school or a special school. Independant or religious schools have their own criteria. There are autism, language and behaviour classes within some areas that children may be elegible for depending on their assessments. Your assessment and IQ testing will often determin where you may THIS PAGE IS STILL UNDER CONSTRUCTION... |
