Key Things To Remember For Parents’ Of Disabled Kids

Whether your new to being a parent of a disabled kid or you’ve been parenting for a while, it can still be difficult.

So we’ve put together some key things to keep in mind. This post comes from our new product – The Parents Guide.

It’s Okay To Grieve

As a parent of a disabled kid, it is always important to remember that is okay to grieve.

You probably had some many hopes for your child that now are not possible, and it is important to recognise this and mourn that loss.

YOUR CHILD’S CONDITION IS NOT YOUR FAULT

Thinking things like, “I did something wrong
or what if I did this differently?”, is not helpful
to either you or your child. There are a million different things that can cause/affect impairment, and impairment can and does happen despite your best intentions.

THERE IS NO RIGHT WAY

Your child will do things differently. They will not do things the ‘right’ way but they will do their way. It is important to encourage, support and play.

IMPAIRMENT IDENTITY IS IMPORTANT

Having an impairment related identity can be crucial to reducing loneliness and isolation, understanding their condition and overcoming barriers. By smartly using online support and looking around locally, your child can own their own condition.

BREAK THINGS DOWN TO SMALLER STEPS

Having a disability is one big problem solving exercise. However, some problems can seem so BIG that there is no obvious solution. For these big problems, you need to work together with your child and break things down and to their fundamentals. Things like travelling can seem impossible but if you plan it properly, it can be easier than you think.

THE DIFFERENCE CAN BE SUPPORT, PRODUCTS AND SERVICES

Proper solutions to problems are often a mix of different things such as knowledge (knowing your rights), products (little things that can help) and proper planning.

Check our page for parents here.

Find more advice and information at: https://contact.org.uk/

For a child with physical impairment making a friends as he/she gets older (ages 7 – 12) can be really tough.

This can be a number of reasons such as:

Having a small social circle and maybe not having many activities outside of school can be really troubling for many disabled kids. It can also negatively impact their mental health as well.

So what can you do about it?

Adapted Sports

First of all, there are number of specialist sports/activities for disabled kids. There can be some travel involved but it can be very worth it.

See WheelPower and Cerebral Palsy Sport for some ideas.

The great thing about adaptive sport is that it can build your child’s self-confidence and give them a sense of what they can do. This is as well as giving them the opportunity to make friends inside those new groups.

There also some great new organisations such CP Teens UK, which was founded by a teen with CP is a great community for making friends in a safe environment.

Don’t Be Scared About Them Being Online

It can be scary for a parent, there child being online and while there are obvious dangers to it, there are also many positives to be found.

Such as this story – https://www.bbc.co.uk/news/disability-47064773

It can be liberating particularly for those who might have severely restricted mobility.

You might worry that your child is too young or that they are spending too much time on a screen, but these are all things that you and your child need to work out together.

PAs

Getting personal assistant/carer, can for some parents feel like extra added stress. as it is just something else to manage/ take care of.

However, since the switch to direct payments/personal budgets, there is ever greater flexibility, including many support services for users.

So what are personal budgets?

Direct Payments/Personal Budgets are where your local authority gives you money directly to employ and manage your child’s PAs.

Now as stated above you might be thinking that this just extra added hassle, but it can be the best thing in terms of getting your child out and engaged in activities.

This is because you have the control and you can choose person who fits with your child’s personality. They may have similar interests, be similar in terms of age and this gives your child the chance to have a ‘friend’.

Now it is important to explain to your (if they can understand) that the PA is fulfilling a role. But for many people having a PA is great way to build confidence, communication and social skills.

For Older Kids

There are now a number of charities and social enterprises that specifically cater for ‘older’ kids.

We know Yorkshire a bit better than other places so sorry for the Yorkshire centric examples but please do look in your own area – there will be something!

Dice Doncaster offer a range of events for adults with a disability and their friends – including accessible night club events.

Downs and Special Friends offer specialist events for young people with any kind of learning difficulty across West Yorks.

Stay Up Late – create opportunities for disabled people in the south of England to go out and enjoy gigs.

We’ve put together some top tips for parents of physically disabled kids. This is an exact from our forthcoming guide for parents, and we excited to share this with you. This advice comes from lived experience from disabled people, parents and professionals. We hope that it helps.

  1. It is okay to grieve

You probably had some many hopes for your child that now are not possible, and it is important to recongnise this and mourn that loss.

  1. A child’s condition is not a parent’s fault.

?Thinking things like, ?I did something wrong or what if I did this differently??, is not helpful to either you or your child. There are a million different things that can cause/affect impairment, and impairment can and does happen despite your best intentions.

  1. There is no right way.

Your child will do things differently. They will not do things the ?right? way but they will do their way. It is important to encourage, support and play.

  1. Impairment identity is important.

Having an impairment related identity can be crucial to reducing loneliness and isolation, understanding their condition and overcoming barriers. By smartly using online support and looking around locally, your child can own their own condition.

  1. Break things down to smaller steps.

Having a disability is one big problem solving exercise. However, some problems can seem so BIG that there is no obvious solution. For these big problems, you need to work together with your child and break things down and to their fundamentals. Things like travelling can seem impossible but if you plan it properly, it can be easier than you think.

  1. The difference can be support, products and services.

Proper solutions to problems are often a mix of different things such as knowledge (knowing your rights), products (little things that can help) and proper planning.

For more information – see?https://www.canchild.ca/

I always feel like there is a lot of miss information out there. A lot of people seem to say a lot of different things and as a parent, it can be hard to know up from down. Here at EthosDisability.com, you can always be sure that our reviews and other content come from people in the know. That being said, I thought that I would take the time to share research that you might find helpful. The first piece that I am going to feature comes from the CanChild Centre for Disability Research, at McMaster University based in Canada. CanChild was founded in 1989, and is a world leading institution in terms of research for childhood disability. They have many interesting resources that can be accessed at: http://www.canchild.ca/en/index.asp

‘If I Knew What I Know Now,’ was a study done with parents who had raised children with Cerebral Palsy about their experiences. I am going to try and streamline the paper into a few key points; I’ll post a link to the full article at the end of the post.

 

  1. Make Time For Each Other

This was something raised by most people in the group. Having a child with a disability does place a massive strain on your relationship with your partner. It’s really important that you still devote time to one another.

 “Take time for each other. ’Cause it’s … really hefty on a relationship.”

 Parent of Abigail

  1. Knowing When To Let Go

Another point raised by everyone who took part was, how hard he or she found it to let his or her child be independent. They said that they were overprotective and this led their child to struggle in later life.

 

“I want for her the life that she wants for herself. And to do that I’ve got to let You know it would be selfish of me not to. But it’s so damn hard.”

 Parent of Irene

“I think I was just overprotective and yet, now thinking back …(It) really wasn’t fair to her you know?”

 Parent of Francis

 Now this research was conducted with a group of parents so if you’re reading this thinking, “oh god, this is me!” As an adult with a disability, I am here to tell you, don’t panic! I read this point and thought to myself, it just must be so hard to let go. Reflecting on it now, my own parents were perhaps a little over protective at times to. But you know, I don’t resent them for that, and your kids won’t either.

 

  1. Do Things For The Whole Family

Many of the parents in the study felt that they sometimes neglected the effect on the rest of the family. They particularly highlighted the effect it had on siblings.

“Certainly (older child) paid a price…‘cause we didn’t play … we didn’t go to things, or if we did go to things it was always such a big deal … it was a lot of

work to load up and unload … it’s not as carefree.”

 Abigail’s parent

 This is a common problem and something, which Team Ethos purposely tries to tackle. On the site, you can helpful guides about swimming, going outdoors and travelling. We’ll be continuously adding to it in the coming months but if there is something specific that you want us to do, drop a note in the forums.

 

  1. Call Things What They Are

In the study, parents reported that it was important to put as many labels on a child as they needed. Labels many pointed out were important for gaining access to services and funding.

“Put as many labels on her as she needs … because without the labels, you

don’t have access to all that. And that opened up everything for her. She

got all the equipment she needed, we got her into the social group that she loves…” 

Greta’s parent

 

I totally agree with this point. From both the parent and child’s POV, you can fail into the trap of not using the terminology because words like spastic for example have been used in negative ways. However, there is a world of difference between spastic CP and Ataxic for example, both in terms of treatment and symptoms. Don’t be afraid to use the right words in the right way.

  

  1. Empower Children To Learn About Their Condition

Members of the study also reported that they felt it was important for children to learn about their conditions as they matured.

“Just in researching their own disability, they realize there’s so many people like them. And yes, maybe they can’t do this, but they can do this … it just gave her, sort of, an understanding that she was a person with a disability. She wasn’t a bad person; she was a person with a disability.” 

Irene’s parent

 Again drawing on my own experience, I was always remembering the impact that going to the CP Sport training days had on me. It was so great meet so many people like me, who shared many of the same problems. But perhaps more importantly, I saw many adults with CP and got to know how they did certain things. I just learnt a lot about how to live with my condition.

That is why when we were creating EthosDisability.com; I was so keen to include user profiles. Being able to see people who have similar needs to you and how they deal with them is just so important.

You can read the CanChild resource here: http://motorgrowth.canchild.ca/en/Research/resources/ASQMEmajor_advicefinaltipsheetjan112010final.pdf

 

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