Insensitive Questions

We’ve all experienced them, the snide remark, the well meaning but inappropriate advice, or the blatant insult. 

How strong we feel today affects how well we respond when someone gets it wrong.  We are often chronically sleep deprived.  We live with uncertainty, fear and worry about the future, coupled with even more mother guilt than usual.  Catch us on the wrong day and you might get an earful far worse than you expected, possibly deserved, but perhaps not very effective in educating or stopping it from happening again.  Preventing another parent or family member from feeling the same pain, by making the other person consider their words next time, is the best we can take from a poor situation.

So what are our options?

Start by remembering we all have our own battles, especially if the insensitive person is related to you.  They may not be able to express it, or feel like they don’t have the right, but your child’s diagnosis doesn’t only affect you.  Assume that insensitive remarks come from lack of understanding or education, or even fear, or grief, before you jump to conclusions and down their neck.  By acknowledging that those close to you have legitimate and understandable worry and sadness related to your child can make a huge difference to your response and give them an opportunity to open up.  You have your own struggles and the last thing you may want to hear is how sad they are, but if they love you and your child they will be hurting too.

Take the opportunity to educate and inform if you can, if not at the time but at a later date, when you have both stepped back from the situation and most importantly never discuss the incident in front of your child.  If the comments are from a family member and not isolated, it’s important to try to address each incident individually if possible, instead of waiting until you reach boiling point.  If it was a throw away comment or a rude and probing question from someone you are unlikely to meet again, try not to respond at all.  Are they really worth it and do you think you are going to make a difference?  Choose your battles, in all likelihood you have enough already.  Education is a good goal but so is self preservation.

Perhaps the question itself was ok but the terminology or timing was poor.  Not everyone is as educated in the most appropriate words or descriptions as chances are they are not as immersed in the life of your child as you are.  Sadly, as much as we like to assume the best, sometimes the hurt was intended and once again this is just as likely to be someone you know well.  Try not to give them the satisfaction of upsetting you and draining your energy, because this is probably exactly their goal.

As much as taking out your frustration on some ignorant person is tempting, especially if today was harder than usual, it’s really not worth it; you may feel better momentarily but you don’t need the added stress on a tough day and your loved one doesn’t need to see you lose control either.

"Learn to respect all kind of people.  Because everyone is fighting a battle on their own.  We all have our problems, bad sides and bad days.  But there is so much more behind it.  Behind me, behind you, behind everyone."
- Unknown

Where To Go When You Need Help

Raising children can be difficult even in the best situation, as the regular passage of childhood often contains special stressors and other challenges. As parents who have children along the autism spectrum well know, childhood is a time of great change and development, which can be especially trying for their children and the family.

There are a number of community and government resources available throughout the country to help parents and caregivers receive the support that they need to help care for a child who has been diagnosed with a significant health issue or condition.

Whether you have a child on the autism spectrum or who has a learning disability, it is important that you know that there are several types of assistance available to you. Assistance is wide ranging and diverse and can include financial support to those with economic difficulties and social support from others who are going through a similar challenge.

The following are just a few of the many types of programs that are available.

My Time: has groups all across Australia that connect parents, grandparents and other carers so that they can support one another in their efforts to care for their children that suffer from a disease, disability or other serious health condition. Groups meet locally on a regular basis, and include a designated carer that will facilitate the children playing constructively while the parents and other primary carers have a chance to meet in person and share their stories, tips and advice for how to cope with the challenges that they face. This community resource is especially helpful to families with children along the autism spectrum.

Australian Government Support for Disability and Carers: the Australian government has several programs and resources for the parents and primary carers of children with serious diseases, disorders and disabilities. Support is wide ranging and includes anything from providing assistance with coping financially and mentally with the special challenges that carers face as they provide care and assistance to children with specific needs and challenges.

Specific Australian Government Support for Children Along the Autism Spectrum: is a great place to start your research if you are seeking help with caring for a child who is along the autism spectrum. This resource provides information and links to assistance that is available to families and other carers of children with autism spectrum disorders.

The Carer Adjustment Payment: provides information to parents and other carers that need financial assistance to care for their child who is under the age of 7 and also has a serious disease, disorder or disability.

State and Territory Carers Associations: provides information about resources available to carers throughout Australia, with links to contact information so that carers can receive local assistance and support.

If you are struggling with the care of your child, consider looking into these resources to ensure that you have all the help and assistance that you need.

Autism Oz Magazine

Autism Oz is a monthly iPad based magazine with a focus on autism health and lifestyle issues.  This magazine provides up to date and current information relating to autism as well as resources that will inspire and support you and your family.  Even if you don’t have an iPad it can be downloaded in PDF.

The magazine utilises a great team of writers who have experience across a whole range of autism issues so they can bring you relevant information and advice.  A great feature of Autism Oz magazine is that it is interactive through the sharing of videos, letters, stories and links to other resources.  It features real life stories from people who share their experiences including their struggles, challenges and successes.  By sharing these experiences it is intended to provide readers with a valuable insight that may assist them on a practical level.

Follow the link to download the free application from iTunes and then subscribe within the application to view the magazine.

In addition, Autism Oz has a great Facebook page that provides a range of additional resources and information as well as the comments, feedback and support from other people.

Are parents placing too much hope on the iPad solution?

You know how much we love the apps that are becoming available on the iPad.  We have often shared our discoveries with you, knowing that the apps have been specifically designed to help children on the autism spectrum.

Recently some autism specialists and researchers have begun to think that we are placing too much hope in these apps.  They seem to think that we expect the apps to perform miracles for our children.  

Do you think that’s true?  I don’t agree.

Over at Autism Plugged In one writer said, "Technology isn't ‘an answer’ but it can sure help and sometimes in quite life changing ways."

He goes on to say, "The special needs Apps on iTunes and Android are interesting, fun, helpful and are usually developed by highly qualified professionals in relevant areas, but they are only ever going to be another tool to add to your kit bag.  It may even be that the App itself does nothing more than provide you with 10 minutes peace, but that in itself is invaluable."
Isn’t that more in line with the way you view your child’s use of the iPad and apps?

I love seeing results like those you’ll see in the video below.  I love seeing a child find the right tool for his needs.  I love the fact that a simple app holds so much promise.  But I don’t believe they are a "cure" for autism.

As parents of children on the spectrum we will always be looking for tools to make our children’s lives easier but we understand that they are only tools.

What is your opinion?  Do you see the iPad as a cure?



 

Advice From Dr Temple Grandin

Dr Temple Grandin recently published an article in Take Part which gave her views on the education of children on the autism spectrum.  I love what she has to say and I encourage you to read it.  I have included an extract here, but you really need to read the whole article.

Her stance - stay positive.

“Special educators need to look at what a child can do instead of what he/she cannot do.

There needs to be more emphasis on building up and expanding the skills a child is good at.  Too often people get locked into a label such as dyslexia, ADHD, or autism, and they cannot see beyond the label.  Kids that get a label often have uneven skills.  They may be talented in one area and have a real deficiency in another.”

She goes on to say “Kids with autism often get fixated on one thing, and it is important to expand their fixations.  If the child loves race cars, then race cars can be used as subject matter for reading and math. If the child only draws pictures of NASCAR race cars, a teacher could start expanding the fixation by having him draw an Indianapolis-type car or draw sports cars that regular people can buy at car dealerships.  The next step of expansion is to draw pictures of places where race tracks are located.”

Her advice is so very logical that it makes me wonder why the education system doesn’t follow it.

Read the rest of the article.  It is practical, sound and full of clear advice.