Another update on Mason

[ClaireNJ]

I’m so so sorry FT for you Mason & all the family
I sincerely hope that things get better for you all
Sending lots of love 😘😘😘xxx

[JudyC]

What a lot to deal with, you do amazingly well taking care of Mason. I'd ease up on the homeschooling if it's stressful for both of you, there is enough on your plate without feeling you have to give that 100%

July is a good way off , and if Mason is still struggling mobility wise the parks are set up well if you need help .

Does he get PIP, I'd apply if he doesn't already.

[DonnaD]

So sorry that you have had more bad news. My own daughter's health is very much like Mason's although with completely different conditions. Her autism is now diagnosed but that struggle is a long story itself. She has Functional Neurological Disorder as well as back problems that have meant she is mostly reliant on a wheelchair outside the house. Please don't be afraid of using it. It has actually been liberating for her and gives her far more freedom to actually go places. It will let him save his energy for better things than just struggling to walk.

When you finally get back to Florida, a wheelchair here won't hold him back at all. Everything is so accessible here it really isn't a problem. My payback for pushing it is never having to carry a heavy bag around the parks.

[loves2plan]

Oh gosh, my heart goes out to you all. He just doesn't seem to be able to catch a break, does he? I really pray that the treatment he's receiving will help soon. Such a brave little boy, coping with so much so young. And you're doing an amazing job taking care of him too x

[Floridatilly]

Originally Posted by JudyC

July is a good way off , and if Mason is still struggling mobility wise the parks are set up well if you need help .

Does he get PIP, I'd apply if he doesn't already.

See more...

Is that the pass thing at Disney to get onto rides? We don’t have that, would definitely be beneficial though x x

[Floridatilly]

Well my husband has come home from work and said that he is not using a wheelchair !
I hoping when he sees the full report he will fully understand. I am not good at explaining things.

[Sandra & co]

Bless you and mason, life just won’t give you a break at the moment. Normally life would be hard for you but with a added pandemic it’s even worse, take all the help offered and try it out. I wouldn’t worry about homeschooling either but just try and do stuff together, art stuff, watching films, getting fresh air etc. I don’t hope things improve soon xxx

[jndt]

Originally Posted by JudyC

What a lot to deal with, you do amazingly well taking care of Mason. I'd ease up on the homeschooling if it's stressful for both of you, there is enough on your plate without feeling you have to give that 100%

July is a good way off , and if Mason is still struggling mobility wise the parks are set up well if you need help .

Does he get PIP, I'd apply if he doesn't already.

See more...

As he's under 16 it will be DLA (disability living allowance). It's a lot of paper work OP but I'm sure Mason would get middle rate care and some mobility payment too (my son doesn't have mobility issues so I'm not sure about it but it's awarded on the same forms so only one application).

[daisymae]

So sorry Mason is going through so much. On the coordination side of things have you looked at Developmental coordination disorder (DCD or also known as Dyspraxia). My son has DCD which affects gross and fine motor skills, coordination, balance and social skills. If you are up to it take a look at the Dyspraxia Foundation and you will find lots of information on there and strategies that help day to day living. My son was never diagnosed on the spectrum but I really do think he is but as he is an adult now I don’t know if he would be able to or want to have a diagnosis. I hope poor Mason gets a break soon. He is a very brave lad.

[DonnaD]

Originally Posted by Floridatilly

Well my husband has come home from work and said that he is not using a wheelchair !
I hoping when he sees the full report he will fully understand. I am not good at explaining things.

See more...

It must be a shock to him and I would leave it until he can read the report. Wheelchairs are not given out lightly on the NHS. We had to borrow one from the Red Cross and then buy one off Ebay when my daughter first needed one and she couldn't even stand at the time and was crawling around the house. The hospital would never recommend one unless the expert thought he really needed it. It sounds like they only expect it to be temporary. Wouldn't it be really good for both your and Mason's mental health if you could get out in the fresh air and go for a long walk?