Support suggestions for parents and caregivers

I have Cerebral Palsy and thought that I would write an article to better support parents of children with disabilities.

Groups

Online and offline support groups may exist. You could find groups on facebook for parents of children with disabilities. There might be resources on other Ibsites such as online forums or newsletters.

There may be offline groups such as various meetings at disability organizations or coffee groups. If none exist you could start your own.

If you live in remote areas you may have to rely on online support groups.

Gaining information and advice

These days you can search the Ib for information. You could also ask questions in groups on Facebook, quora.com or forums.

Advice

You will probably encounter conflicting advice frequently. I would advise you to take the concerns of the disability community seriously if you're evaluating advice from multiple sources.

Financial help

Financial pressure can add to stress therefore I believe that it is important for families to be properly supported.

Supporting a person with a disability can be a full-time job while the person is at home so I believe that it's important for parents to be supported in this role.

Equipment and supplies can add extra expense to the family's budget.

It would be worthwhile to assess what assistance is available by the government, disability organizations, and/or charities. Some people may not know what help they can get.

Relax occasionally

Everybody needs to have down time. Ensure that you can do this with friends and/or family.

Respite care

Parents need a break from time to time so a good respite care system could be helpful.

I believe that as a parent you should ensure that the respite care option is safe and comfortable for your child.

Take someone on holiday to help

If you can afford it you could take someone on holiday to help. An option could be a friend or family member; you may have to compensate them.

Ensure that the person actually will be helpful. My parents have had questionable experiences before.

Look after your family

Sometimes things can be difficult especially if people in your family are stressed. If you can, do things to take problems away from your kids and/or spouse they may be happier and not be in a bad mood.

Of course you're not a miracle worker but there could be little things you can do. If you're experiencing problems with your kids discuss them with your spouse and see if you can find solutions.

Stress and depression

Parents of children with disabilities may be more prone to stress and depression. I believe that parents should get help for these things if they encounter them.

A good support system may make life easier. Ensure that you can talk to friends and/or family often.

Accept help when offered

Some parents may be too proud to accept or ask for help, I know that this is true for my parents. Perhaps they assume that they are the only ones that do the job right.

Consider accepting help more often.

Assessing and getting what you need

I believe that it's important to assess what you need occasionally. For example a hoist may be useful.

You could ask around to see what support other people are getting. You could ask therapists or case managers.

Needs do change throughout the child's life so this is why I recommend assessing what support you need occasionally.

It's possible that sometimes you'll need to fight for what you need and this is unfortunate.

Funding options

If you cannot get what you need you may have to apply to organizations that offer funding or explore crowd funding. If you need help with this ask someone to assist you.

Assess the area that you live in

It may be possible that another area is better for accessibility. Some benefits of moving to a new location could be more accessible paths or more resourced schools.

Moving is a drastic step but in some cases it could be beneficial.

You may want to try to change things in your area before you consider moving.

Advocacy

You may need to be involved in advocacy if something is not accessible. This could happen more frequently than you imagine. I believe that it's important to be strong when necessary.

It could be beneficial to pick your battles too.

You may want to check if the issue is important to your child. It's possible that you could be worrying about things that don’t bother the child. It's true that the issue may have merit regardless of the child's feelings but the child's feelings should be Iighed.

Writing to businesses, community boards, councilors and your government could be useful.

If you get good at advocacy you might like to teach your child advocacy skills.

Some disability organizations may help you with issues. It's good to have strength in numbers. You could also help them with their advocacy.

I have written another article on advocacy. It's written for people who have disabilities but you may take some ideas from it.

Advice from people with disabilities

People with disabilities should put advice out there for parents to consume. While people may have different opinion it may be helpful for parents to read the experiences and advice of people that are similar to their child.

You could do this by writing articles or even a book. You don't have to devote an entire book on parenting but a parenting section in a biography could be worthwhile.

A downside to this would be if you criticize the parenting that you experienced then I imagine that it may cause problems for you. You could always release works anonymously or under a pen name.

Disability organizations that help parents

Many parents may not know about your organization so it's important to have your information available online and get links to your Ibsite from the appropriate places on the internet. Ensure that other disability organizations link to you and your Ibsite appears in the appropriate local directories.

Thanks for reading

I hope that this article was helpful for you.