Coping with disabled child and new baby

Nicky2018 · September 2018

I have just found this forum and looking for some advice. I have a 4-year old with a rare progressive disease called FOP and expecting a baby in Dec. My daughter can currently walk short distances but most the time in a special needs chair as her mobility is seriously impacted. Any tips on getting out and about with a baby and my daughter? I already have a sling which I hope to use.

Sam_Alumni · September 2018

Hi @Nicky2018
Welcome to the community and congratulations on your pregnancy!

Slings are great and very handy, I wonder if there are any double buggies that incorporate a special needs chair and a pram?

@DavidM from charity Remap design custom made free equipment for disabled people, perhaps they could help?

@Jean_Scope or @simonsable Do you know about any equipment that might help?

Sam_Alumni · September 2018

I also found this buggypod which is a clip on side seat for buggies.

DavidM · September 2018

Our volunteers at https://www.remap.org.uk/ love challenges like this and would be delighted to help find a solution Nicky. All equipment provided free of charge and custom made just for you!

Nicky2018 · September 2018

Thank you all so much for your helpful responses. The buggy pod is a great idea but sadly won't work for my daughter.
@DavidM thanks so much for offering help via Remap. I'll be in touch :-)

Sam_Alumni · September 2018

So glad to get you both connected!

simonsable · September 2018

Unfortunately, my expertise doesn't fall in this area. However, my advice would be to maintain a good relationship with an OT so you can enquire about equipment. Also try to go back to Naidex exhibitions so you can see what new equipment is coming on the market

Jean_OT · September 2018

Hi @Nicky2018

Thanks to @Sam_Scope for inviting me to join this conversation.

There are specialist products designed specifically for this purpose. For example see : http://www.twinsuk.co.uk/products/101644/Tandem-Special-Needs-Double-Buggy/?_sm_au_=iVVsDnsQ5ksPq0s5

However, they are awfully expensive. This isn't something that your Community OT will be able to provide. However, there are charities that might be willing to contribute towards the cost. Try:
Newlife: http://newlifecharity.co.uk/docs/care-services/Newlife-Equipment-Grants.shtml
Family Fund https://www.familyfund.org.uk/FAQs/how-do-we-apply

Also there is a grant search tool on the Scope website which may help identify other options: https://www.scope.org.uk/support/disabled-people/search-grants

Totally agree that it would be worthwhile checking out if REMAP and also DEMAND: https://www.demand.org.uk/ to see if a safe and suitable custom solution can be found for your children's needs.

Best Wishes

Jean

Coping with disabled child and new baby

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