Can-Do-Ability: Answers and Solutions from my personal experiences of living with a disability

Raising Children With Disabilities

25 May 2011One really important thing to remember, if you are raising a child who has a disability, is to make sure they’re aware from an early age, that there is nothing ‘wrong’ with them, they just do things differently to others, and that they can do anything they want to achieve (within reason of course).

Some of the most subconsciously damaging things you could do to your disabled child is, doing everything for them, always letting them get their own way (perhaps because you feel guilty about the situation they are in), not letting them be a child (mollycoddling them, because you are afraid that they will hurt themselves).

Accidents do and will happen with all children, disabled or able-bodied, but you need to realize, they will learn from their mistakes, in most cases it may take longer, but they will become a better person for being able to discover things that their friends or siblings are doing, and it will make them stronger adults.

My mum and dad used to argue a lot about letting me do things when I was young. Dad wanted me to sit still and not do anything too physical, so I wouldn’t hurt myself. Mum wanted me to learn to ride a bike, play with my friends, and join in with the other kids during games at parties, so I would get the same experience, with everything, just like my friends and older brother.

I can see both sides of their argument now, as a parent, all you want to do is protect your child and not let any harm come to them, but on the other hand, you don’t want them to be isolated and treated differently, because they aren’t able to participate in ‘normal’ activities.

I did a lot of stupid things when I was little, broke a LOT of bones unnecessarily, but doing those things, made me know my limits, and not to do them again, or if I did, be more careful, or be prepared to end up in hospital.

My mum and dad split up when I was four years old, and as much as I equally love both of my parents now, I feel kind of lucky that they weren’t living together while I was growing up. Because my mum let me do things that I know my dad wouldn’t have, and for this, I am the strong person that I am today. My dad always had the best of intentions, but I really think holding me back from doing things would’ve made me less confident in life and as a person.

The other most important thing to do is educate, educate, educate. Educate everyone you meet! As a disabled person, I always see really young children pointing at me, or staring, some parents try and explain to their child why I may be in a wheelchair, while others, quickly grab their child and turn the other way, telling them not to look. This is very damaging to a young child, as they could end up associating someone with a disability as something that is wrong, that shouldn’t be looked at or acknowledged.

If children are educated young about why someone is in a wheelchair, or why they talk differently, or walk with a limp, then they will be less likely to shy away from or be afraid of people with disabilities when they get to school for example. Some parents from disability support groups that I am part of, like to print out a whole lot of information about their disabled child, for their child’s teacher and class to read. This will help the teacher and other children know what to do in case of an emergency, it will also educate the other children, for later on in life.

Typical progressions you will go through if your child has a disability: here is a list of feelings and changes that you may face if your child has a disability. These feelings may feel wrong or evil, at the time, but they are very common within families of disabled children.

Grief – parents will feel a sense of loss or grief when they discover that their child has a disability. This is normal, when you have a child, you have certain expectations in your mind, for what your child will be like, but when they have a disability, these thoughts can come crashing down, and you are brought back to reality.

Feelings that you may experience are sadness, anger, shock, fear and resentment, you may wonder why your child has a disability or what you did to deserve it. Any child is a blessing, and although the struggles you will face when you have a disabled child, compared to an able-bodied child will differ vastly, you will still, in time, feel happiness, when you experience the normal joys of watching your child grow and learn.

Stress – having any child will bring a certain amount of stress to your life at some point, but when that child has a disability, the stress is heightened, from the amount of physical, emotional and mental strains that you will face.

A child with a disability will probably need regular visits to a specialist or doctor, extended stays in hospital, therapy and extra care at home. Depending on how severe your child’s disability is, they may also need constant supervision.

This high level of care and responsibility can put a lot of pressure on parents, which could strain relationships with your partner, your other children, family members and friends. There can also be financial stresses added on top, so finding the best assistance in the community or within government organisations can really help to ease part of that burden.

Coping – if your child has a disability, it’s great to establish a strong, helpful support system from early on. Obviously, a child who has both parents around will have a greater advantage, but this isn’t always realistic.

There are many disability support groups available, that you could seek out, there are usually groups dedicated to specific disabilities. Being part of these support groups, will assist you in finding the best recourses for your child, it will also give you a chance to discuss fears or pressures with other parents who are going through the same difficulties as you are.

Respite is also great, especially if your child has a severe disability that requires 24 hour care. Again, your local support group should be able to provide you with details for assistance in this area. A medical professional or local hospital should also have information available on respite care.

It’s always important to include your other children, so they don’t feel left out. Otherwise, it could cause them to dislike or resent their sibling who has a disability. They need to be aware what their siblings disability is, why it has occurred and how to explain it to others.

Siblings also need to know that they can talk to you if they are feeling troubled or if they don’t feel they are coping. If not handled correctly, this could develop into other problems later on in life as a result of keeping their feelings bottled up.

There is a great Australian internet support group called Livewire, this is a service for children with disabilities, their siblings and parents. There are chat groups, so you can all talk to others who are going through the same situations. There are great tips for your family, and it’s also a great way to entertain your children. There are lots of fun games and activities to do. I wrote a blog about Livewire last year, click here, to read more about it - http://www.candoability.com.au/CDA/Blog/Livewire_87.html

There are many services available for children with disabilities, there are far less for adults with disabilities, so I recommend taking advantage of these services while they are available and while your child is young.

Below, I have listed some website links for some Australian services. There is also a link to a list of different disability recourse sites around the world, for my overseas blog followers.

National and International services:
http://www.ecia.org.au/links.htm

New South Wales:
http://www.acd.org.au/information/linksb.htm

Northern Territory:
http://www.det.nt.gov.au/parents-community/early-childhood-services

Queensland:
http://www.qppd.org/

South Australia:
http://www.sa.gov.au/subject/Community+support/Disability/Preschool+children+with+disability

Tasmania:
http://www.dhhs.tas.gov.au/test_pages/find_a_service/?region=*

Victoria:
http://www.acd.org.au/information/links.htm

http://www.education.vic.gov.au/ecsmanagement/careankinder/inclusion/disabilities.htm

Western Australia:
http://www.disability.wa.gov.au/forindividuals/family_living_initiative.html

I hope I have shed some light for those of you, who are raising a child, or children with a disability, or if you are about to begin your journey. Just focus on the end result, things may look bleak in the beginning, but your child will return the love that you give them. Cherish every moment, try and be as positive as you can, you will be amazed at the outcome, and of the goals your child will accomplish, even if they seem to be the smallest of achievements.



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Don't stop them from doing what they believe they can do

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