BIRTH TO THREE YEARS:
The diagnosis of Angelman Syndrome can be particularly difficult in infancy. Symptoms will appear gradually, when your child fails to reach certain milestones. But as there is always a range of rates at which all children progress; and feeding problems, and crawling or rolling over later than other babies is not in itself a reason for concern. Where there is an agreed concern with you and your GP that your baby may be “failing to thrive” or if there are other indicators that something is not quite right, you should be referred to a specialist Paediatrician at the public hospital. The Paediatrician will do a detailed assessment and will have access to a variety of tests and other specialists in areas like Orthopaedics, Neurology, Audiology, etc. In their role as care co-ordinator the Paediatrician can also involve other services such as the Genetics Service for specialist diagnostic tests. Samples of blood will be sent to laboratories here in New Zealand or overseas, to do further testing.
Once a diagnosis Of Angelman Syndome is established, there should be clear information provided about the professionals who will provide ongoing treatment and care. When several are involved, one of them should take the role of key worker to co-ordinate the health and disability needs of your child.
An important resource for parents and medical team: Angelman Guidelines
Starting the Journey: Starting the journey
Specialist Health Services: Access to specialist health services in the New Zealand public health system is controlled by a process of referral by health practitioners authorised to do so. Usually that is your General Practitioner. The only other source of specialist advice is to pay for private consultations from specialists in private practice. The public health system referral process should get you the consultations you need to diagnose and treat your child’s condition, whatever specialist you need to see. The referral will be to the specialist clinic at a public hospital and the consultation, and any subsequent laboratory tests, X-rays or scans ordered by the specialist will be free of charge.
Some of the services you might be referred to include:
The Genetics Service – for diagnosis of genetic conditions, explanation of the diagnosis, discussion of prenatal or pre-symptomatic tests for genetic conditions, and to discuss implications of a family history of genetic conditions. These services are based in two centres, Wellington and Auckland, but they have outreach clinics in other areas.
Intervention teams – set up in some centres, may cover areas such as paediatric development, Occupational therapy (OT), Physiotherapy (PT), Speech Language therapy (SLT). – Kids Health early intervention info
2. THREE TO SIX YEARS:
Participating in Your Community: Equipment, housing, transport, education and vocational assistance – to help day to day activity and participation in your community.
A variety of government subsidies are available for equipment, house modifications and modified vehicles but the criteria are complex and tight. Details of these criteria are available from the two agencies that administer the programmes:
AccessAble – for the Auckland and Northland regions. Freephone 0508 001 002
Enable NZ – for the rest of the country. Freephone 0800 17 1981
The Lottery Grants Board’s Individuals with Disabilities committee considers grants for vehicles and communication equipment to assist independence and access to the community. Applications are usually considered only when applications to government sources have been declined.
Operation Mobility is a scheme providing parking concession cards and it is administered by CCS.
Preschool options:
Your child should qualify for a teacher aide to support them while at preschool. There are several choices as to what type of preschool education you might choose for your child:
1. Kindy programmes are easily adapted to include a lot of sensory play and physical activities: all about kindy
2. Playcentres are perfect for mums who dont go out to work: welcome to playcentre
3. There are also a few widely spread pre-schools specifically for kids with special needs: special education for nzders
3. EQUIPMENT: coming soon
4. . SIBLINGS:
Angel On Earth
He might not talk he might not walk
But his smile lights up my world
He gives me hugs he gives me love
… And giggles when he’s twirled.
Sparkling blue his eyes shine true
Of innocence and pure joy
He has special needs but I don’t care
He is my cherished boy.
His name is Maverick he is my brother
My angel here on Earth
Sent by God from heaven above
A blessing since his birth
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