We're parents to an amazing 5 year old boy. Our son has diagnoses of Autism (ASD), Global Developmental Delay (GDD), Sensory Processing Disorder (SPD), ARFID (Avoidant / Restrictive Food Intake Disorder - he's eaten no solid food at all for over a year), he's completely non-verbal, has serious sleep issues and we've recently been told that he has a PDA profile (Pathological Demand Avoidance).
In short, he's the most amazing little guy ever!
Becoming parents for the first time is enough of a challenge, but finding out that our son had special needs, what these needs were and how to help him deal with them was something we never expected to have to do. If this wasn't difficult enough, as most SEND parents will have found, things are not always made easy for you and we've had to deal with our local authority refusing to even conduct a needs assessment for an EHCP, having to appeal DLA awards, being told there is no provision from our local authority to provide any support for one of his conditions and in general having to continually fight to get our son (and us) the support he needs and is entitled to. Doing all of this while caring for a child who has been up during the night for an average of three to four hours a night for the last 5 years has at times been very difficult and put a lot of strain on us.
All send parents will have had their own unique difficulties and challenges, but it's the most rewarding job ever.
We've now reached a point where our son has all of his official diagnoses, he has an EHCP and attends an excellent local Special School and for his conditions where our local authority could not provide him the support he needed, we've sourced that support ourselves independently and now have this funded by our local authority. For several years, every spare minute of every day seemed to be spent fighting for our son and it's nice now to have reached a point where this is not necessary every second of every day.
After doing massive amounts of research (and getting lots of helpful tips along the way from other parents) we initially put together a document detailing support available in our local area to try and help other parents. When this got to in excess of 30 pages we decided it wasn't the best format for this information and expanded it to form this website. We really hope that it will be of help to someone.
We still feel quite new to all of this and we're still learning all the time.
Wishing you all the best of luck on your SEND journey, Adrian, Tracey & Max.
Special thanks to:
Live & Love It Occupational Therapy, Horsham
And all the individuals who have helped us along our journey so far
If you spot any errors or know of anything else that might be of help to others please let us know traceyadrianmax@gmail.com
Join us on Facebook https://www.facebook.com/groups/sendhelpuk
