Additional Needs

Special Needs Parenting: Why Won’t They Help Us?

Posted by Zowie Kaye on 8th February 2016 Additional Needs, Disabilities

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“Zowie do you know that there is carer’s allowance?” – Oh, no!

“Zowie – you can contact the ASD partnership for support and advice” – I see!

Thank you, thank you - From the bottom of my heart THANK YOU!

Society has a lot to say about the World Wide Web and social media; good, bad and the ugly.

I worship GOOGLE and am so grateful that I have this tool to aid in my journey and that Facebook has brought me to meet wonderful people on the autism groups.

Time and time again though I see the same introductory posts from people starting their journey and asking where exactly they can go to for advice and support.

I feel from peoples posts their frayed emotions; at the end of their tether, searching for answers in desperation…

• “Can someone please help?”

• “I read somewhere that...”

• “Does anyone know?”

• “I have heard that...Is this true?”

Why are we having to search for the answer to these questions online?

Why is there not by now an NHS pamphlet or webpage that you are given at the beginning of the process, with all your useful contacts to the agencies/support/entitlements?

Why are the professionals; who are making us jump through loops, stand on our heads and guess the winning lotto combination before they will consider our concerns –

not giving us the information post diagnosis that would make our lives that bit easier and transition smoother?

As if the stress of losing your sanity in SEN documents, assessment scheduling, phone calls and meetings is not enough.

Oh and let’s not forget the emotional strain within your relationship/marriage/family stronghold…No!

That’s not quite enough burdens to bear; we then have to magically know to ask at the right questions to get answers to get the things that we don’t know exist.

So for those that have come across this blog in their early days here are just a few of the things I have found out so far.

Some entitlements are means tested and you may not qualify (like me); but still, it only takes a phone call to check:

• Disability Living Allowance (DLA) can be claimed for children who have additional care needs (you can apply for this before the actual diagnosis)

• Child Tax Credit and Working Tax Credit

• Housing Benefit and help with Council Tax or Rates

• Carers allowance

• Manchester airport do an awareness scheme, a detailed visual booklet specific to each terminal which includes a wristband to alert staff to passengers with additional needs.

• Many cinemas have autism friendly screenings…yes!! No adverts

• A John Lewis store (Cheadle) has autism friendly sessions for children to book in and have a 1-2-1 shoe fitting session. Check availability at other stores

• The Trafford Centre Shopping Mall in Manchester have developed visual guides and alert cards for both children and adults with ASD (details on their website)

• The Family Fund Trust helps families of disabled children. They can supply grants for such things from holidays to washing machines.

• In most attractions you can get in free as your child's carer when you purchase them an entrance ticket (see individual attractions, we were at “Ripley’s Believe it or Not” in London)

• Also at many attractions (we went to LEGOLAND Windsor) you can obtain cue jump tickets/wristbands to help reduce anxiety of waiting times.

There are many more I am sure; never be afraid to ask, there is no such thing as a silly question.

They (the powers that be) may not be eager to help us, but you can bet your bottom dollar another mum in your shoes who is living this alongside you will never tire to help.