Following a new diagnosis of a learning disability, you may feel relieved, scared, uncertain or maybe all three – it can be overwhelming. What is certain is that you will have a multitude of questions. Accessing information is what will stand you in the best position moving forward. Even if you have not had a diagnosis, but have concerns about your child, let us point you in the right direction.   

HOW TO SUPPORT YOUR CHILD 

The Good schools Guide image, wite writing on a purple backgroundIf your child has special educational needs and disabilities (SEND), the first person you should speak to about support is the Special Educational Needs and Disabilities Coordinator (SENDCo) at your child’s setting. The SENDCo is responsible for the provision of every-day special education in nurseries, schools and colleges. It is their responsibility to ensure that the needs of children with additional needs are being met. If you have concerns about the setting your child is currently attending, or would like to investigate other options, you can find inspection reports here. You could also take a look at the Good Schools Guide.  

Unfortunately, the reality is that SENDCos and local authorities are stretched and may not be able to provide timely support. Additionally, there has been a growth in demand, which has left councils struggling to provide vital support. Trust your own instincts as you know your child best. Get busy talking to significant people in your child’s life such as your friends, GP and parents of children with similar conditions. You might want to consider joining a rising number of local support groups. As a helpful starting point, we recommend looking at Reaching Families ‘bitesize info’ to get you off the ground.  

LOCAL OFFER AND CHARITIES 

Local Offer cartoon image of a person holding a board of amenities like buses, schools and parksEach Local Authority within England must have a Local Offer whose role is to provide information about local services, events and support. It should also offer guidance as to what funding is available. 

PECS® UK is based in Brighton, our local offer is run by a charity called Amaze and they are just that – truly amazing! Follow the link to find a list of charities local to you, or take a look at our Funding Resources page for more ideas. Independent Provider of Special Education Advice (known as IPSEA) is a charity which helps to improve educational support for children by offering parents free and independent legally-based information, advice and casework support.  Also worth a mention here, is the National Autistic Society, the leading UK charity for those with ASD. They offer a wealth of guidance and fully explain the ins and the outs of Carer’s Allowance and the Employment & Support Allowance. They provide tips for filling in PIP forms, as do SENDIASS (see below). Additionally, NAS has an informative section for post diagnosis support, including support for siblings.  

Education Health and Care Plans (EHCP) 

piles of paperwork with a hand seek help appearing from beneath the reamsYour child may qualify for an EHCP, which is a legally binding document that states the level of support an individual will receive within education settings. The EHCP was designed to create a change in the way that education, health and social care professionals work with families and young people. As your child grows, the EHCP travels with them from setting to setting and should be reviewed on a regular basis. Read about the SEND game to make sure you get all the support you can. If you do not feel you are getting the support you need, then you could also try contacting your local SENDIASS. They can help with understanding legal processes for assessments, managing your expectations of timescales and help you to complete important paperwork. You may be interested in this video about special education provision and who is responsible for what.

SOCIAL MEDIA SUPPORT GROUPS AND SELF-CARE 

Adult wearing an oxygen mask placing an oxygen mask on a childFinally, as you would expect there is an ever-growing number of Social Media Support Groups. You do not have to join them all! Find ones that work for your situation; for example Not Fine in School is exclusively for parents and focuses on school attendance difficulties. We have our own very active Facebook Group where you will find a mountain of free support and expert advice on PECS® – join here.  Well worth a mention here is The Autism Page where you’ll find a mountain of useful advice! No less than 21 of the top autism bloggers and online influences have come together to give advice to parents of recently diagnosed children. We all know the old adage of “Put on your own oxygen mask first”- in order to fully support a child you first need to take care of yourself! Take some ‘me time’ so that you are in the best shape to meet the needs of your child.

By Michelle Hale

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