Wheelchair technician appointment (plus update)

[EssexSue]

Have you spoken to the school about parking? I'm sure they would be happy to help you.
I'm not sure if it's the pandemic but the amount of support you are getting is dreadful compared to that my daughter had from GOSH.

[vowels]

Originally Posted by Floridatilly

How do you find or contact a benefit advisor?
I am really interested in access for school (the school car park is coned off during drop off/pick up time) so I really believe a blue badge or something would be massively beneficial.
I don’t imagine we can get any disability allowance because he isn’t terminal or have a disability and I am hoping and praying these infusions will put the Crohn’s and arthritis into remission 🤞🏻🤞🏻🤞🏻🤞🏻
So I am hoping everything is short term but some kind of parking aid would make a huge difference as parking anywhere around here is a nightmare.
Thank you x x

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Speak to the school, they have an obligation to ensure Mason has an education and that includes access to the building and they will be happy to help.

It is worth having that conversation now, so that they can have a plan in place for when Mason is ready to resume a school based education. Your Occupational Therapist will be able to help ensure the school is Mason friendly. If Mason does not have a referral to an Occupational Therapist, speak to his Consultant and GP. The OT should also give help with Mason's toilet needs, at home and school.

Crohn's and arthritis are disabilities.

Mason is disabled and is entitled to benefits and I encourage you to claim everything. I know it is difficult to label your lad as disabled, please remember this label is not what defines him, it is his heart that does that.

The disability label is there to ensure that Mason has the same opportunities as every other child, particularly when he is poorly. The benefits should not be seen as money, but as a way to open more opportunities for Mason. You may want to use some of the disability money to pay for a cleaner - a friend of mine does this - or for someone to do the ironing. This removes some of the daily tasks and gives you more time for Mason when he is poorly and some time to yourself, because you need to look after yourself. You will probably find when Mason's health improves, you will realise how much of a rest you need!

I would follow Colette's suggestions for advice. You might also consider calling a Crohn's or Arthritis charity for benefits advice. Ensure you also claim a carers allowance and be brutal about Mason's needs when filling in any benefit form, it is his needs when he is at his worst.

I really hope that the medication puts the Crohn's and arthritis into remission for Mason, but, it is remission, not a cure.
I am sorry, I know this sounds mean, but these diseases do not disappear so it is best to take every benefit and offer of help so that if Mason has flare ups in the future, all the help he needs is there. Prepare for the worst, and we will all hope for the best.❤

Apologies for misspelling your name, Colette. 🤪

[Ladyshopper]

Originally Posted by Floridatilly

How do you find or contact a benefit advisor?
I am really interested in access for school (the school car park is coned off during drop off/pick up time) so I really believe a blue badge or something would be massively beneficial.
I don’t imagine we can get any disability allowance because he isn’t terminal or have a disability and I am hoping and praying these infusions will put the Crohn’s and arthritis into remission 🤞🏻🤞🏻🤞🏻🤞🏻
So I am hoping everything is short term but some kind of parking aid would make a huge difference as parking anywhere around here is a nightmare.
Thank you x x

See more...

You don't need to be terminal, and it isn't about having a specific condition on a list, it's about how Mason is affected and what care needs he has.

citizensadvice.uk/be...ing-allowance/

Maybe have a look and see what you think. It sounds to me very much like Mason would be entitled to it.

[Floridatilly]

Originally Posted by vowels

Speak to the school, they have an obligation to ensure Mason has an education and that includes access to the building and they will be happy to help.

It is worth having that conversation now, so that they can have a plan in place for when Mason is ready to resume a school based education. Your Occupational Therapist will be able to help ensure the school is Mason friendly. If Mason does not have a referral to an Occupational Therapist, speak to his Consultant and GP. The OT should also give help with Mason's toilet needs, at home and school.

Crohn's and arthritis are disabilities.

Mason is disabled and is entitled to benefits and I encourage you to claim everything. I know it is difficult to label your lad as disabled, please remember this label is not what defines him, it is his heart that does that.

The disability label is there to ensure that Mason has the same opportunities as every other child, particularly when he is poorly. The benefits should not be seen as money, but as a way to open more opportunities for Mason. You may want to use some of the disability money to pay for a cleaner - a friend of mine does this - or for someone to do the ironing. This removes some of the daily tasks and gives you more time for Mason when he is poorly and some time to yourself, because you need to look after yourself. You will probably find when Mason's health improves, you will realise how much of a rest you need!

I would follow Collette's suggestions for advice. You might also consider calling a Crohn's or Arthritis charity for benefits advice. Ensure you also claim a carers allowance and be brutal about Mason's needs when filling in any benefit form, it is his needs when he is at his worst.

I really hope that the medication puts the Crohn's and arthritis into remission for Mason, but, it is remission, not a cure.
I am sorry, I know this sounds mean, but these diseases do not disappear so it is best to take every benefit and offer of help so that if Mason has flare ups in the future, all the help he needs is there. Prepare for the worst, and we will all hope for the best.❤

See more...

Thank you, that all certainly makes sense.
Mason is under a OT, she is brilliant to be fair so I will email her for advice regarding returning to school.
The schools car park is certainly a tricky situation because the school is near the town centre and paid parking is minimal, with double yellow lines near school. No matter how many times the school has insisted over the years that no one is to park on the school car park, people running late or those wanting free parking to pop into town always use the car park and its only very small. So over the last couple of years the gates are closed and cones are put out.
I could suggest bringing him early or late though.
School want a meeting week commencing 24th May, I have requested it be a little sooner because we have 3 Alder Hey appointments that week. X x

[vowels]

Originally Posted by Floridatilly

Thank you, that all certainly makes sense.
Mason is under a OT, she is brilliant to be fair so I will email her for advice regarding returning to school.
The schools car park is certainly a tricky situation because the school is near the town centre and paid parking is minimal, with double yellow lines near school. No matter how many times the school has insisted over the years that no one is to park on the school car park, people running late or those wanting free parking to pop into town always use the car park and its only very small. So over the last couple of years the gates are closed and cones are put out.
I could suggest bringing him early or late though.
School want a meeting week commencing 24th May, I have requested it be a little sooner because we have 3 Alder Hey appointments that week. X x

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Glad it helped.

I would not offer to arrive at alternative times, early puts extra pressure on you all to get there and late means Mason is missing the morning chat with his friends.

Cones can be moved, gates can be opened. The onus is on the school to make it work, and I am sure they will. ××

[Bootrip2]

Originally Posted by vowels

Glad it helped.

I would not offer to arrive at alternative times, early puts extra pressure on you all to get there and late means Mason is missing the morning chat with his friends.

Cones can be moved, gates can be opened. The onus is on the school to make it work, and I am sure they will. ××

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This 100% the school SHOULD be helping as much as possible to enable Mason to be invluded in all school activities, this is not your problem but their legal obligation.

[Floridatilly]

Another little update. I have probably mentioned that Mason doesn’t communicate very well, doesn’t make eye contact and only speaks to certain chosen people. He reacts quite badly to treatment (mentally not physically) and on his last investigation they had to sedate him. We are waiting for the panel to decide on autism. That surgeon referred him to the hospital’s psychology department.
The lady has read through Mason’s notes and just rang me horrified that he hasn’t had any support so far. He has been assigned a acute liaison learning disability nurse who will ring me tomorrow and for future treatments he will have a play therapy nurse too.
Things certainly feel like they are moving in the right direction finally 🥳

[Bootrip2]

Loks like he may start to get the support he needs, this will make a world of difference to you too knowing that finally they recognise his needs. X

[Floridatilly]

I have bite the bullet and just applied for a blue badge for Mason 🤯
I filled it in online and paid £10.
I really do hope he gets one 🤞🏻🤞🏻 No idea how long the decision will take but I am certainly feeling pro active 👍🏻

[marypoppins38]

Good for you FT, he certainly deserves one. It will make life a whole lot easier for him. Hopefully once he gets his wheelchair you can get out and about with him, it will do you both the world of good.