I want to thank everyone who read, commented or shared my post on becoming a special needs parent recently. I was amazed by the support I received and overwhelmed by how many people out there seemed to benefit from this information.
That post was more about giving some advice on how to emotionally and mentally support yourself as you embark on the special needs journey. It’s something that I felt was lacking and I hope it can help others avoid some of the mis-steps I made as I started along.
Today I wanted to pick up on some of the points raised by commenters about more practical things parents can do to make the journey less stressful and more organised. If you start out organised and aware of your options it will definitely ease your stress levels – trust me!
So here is some more practical advice for special needs parents – particularly those parents of newly diagnosed children.
1. Knowledge is Power. I am the sort of person who needs to know as much as I can about what I am dealing with. When my son was first diagnosed with albinism I read everything I could about it in order to understand what we were facing and how we could best support Gilbert throughout his life.
Doing a little research makes me feel more empowered and better able to advocate for his needs, especially if I have any reservations about a proposed course of action. You are literally thrown into the deep end when you receive a special needs diagnosis so it is important to learn as much as you can so you can be the advocate that your child needs.
2. Expect lots of paperwork and be prepared to keep it organised. My friend Liz made this suggestion and it’s spot on. You may have already had assessments and tests prior to the diagnosis but these will more than likely ramp up as you get in touch with Occupational Therapists, Speech Pathologists, Psychologists, Audiologists, Opthalmologists, etc in order to begin treatment.
I have a folder for each of my kids containing their various reports. I try to keep the reports sorted together so that I can easily refer to them as needed. I also have some dedicated space in a filing cabinet devoted to medical receipts, health fund claims and other information in relation to their conditions. It can be a lot of work but you will be grateful for doing it the next time you’re asked for a referral or you need to provide a copy of a report.
This post by Giovanna Scott who guest posted over at The Organised Housewife provides some more ideas for keeping medical records, assessment reports and general paperwork organised.
3. Understand your entitlements in order to subsidise medical expenses. This is not an easy thing to do – it’s a minefield navigating Medicare and Centrelink and your health fund but it’s essential to know what you can and can’t claim. Then you can establish what therapies and treatments are affordable and ensure you’re not missing out on assistance that you are entitled to.
Depending on your child’s diagnosis, you may be eligible to access a Chronic Disease Management Care Plan or Access to Allied Psychological Services from your GP through Medicare; the Carer Allowance through Centrelink: and you may be able to claim a benefit for some of the costs of specialist appointments and non-PBS prescriptions through your health fund.
Don’t forget there’s also a 20% tax offset on net medical expenses over $2,000 through the Australian Taxation Office (although this is being phased out and eligibility has been tightened).
Bronwyn from A Life Less Typical wrote a fantastic series of posts on Navigating the Funding Maze which cuts through the confusion and easily sets out what you may be eligible for. It’s written from an autism perspective but it touches on all aspects of the funding maze and is well worth a read if you wish to find out more.
4. Start thinking about education options. Even if your child is very young, it’s never too early to start considering early intervention and schooling options. Depending on your child’s needs there may be several options for their education. You need to know what these options are and investigate them so you can make a decision and start working towards a successful transition.
Last year I wrote a series of posts about my son’s transition from a special education setting to a mainstream classroom. They went through his history, the paperwork and red tape involved in the move and the practicalities of his transition process. I plan to write a final post soon documenting his positive progress in this new setting – for us this move has been well worth the stress and the worry of transition.
Whatever you decide, communication is the key. You need to be clear about what your child needs and be prepared to fight for these needs. In my experience, working with a school as early as possible gives the best chance of success.
5. Investigate care and respite options. You will need to take a break from time to time for necessity and for your own mental health. Having a go-to person in place when needed will really help lower your levels of stress and allow you to fully appreciate time away from your usual caring responsibilities. I know I couldn’t survive without my in-laws who provide a break from time to time for us.
If you do not have a family member or friend that you can turn to you could look at occasional care or nannies or babysitters. Care for Kids has a page dedicated to choosing child care for special needs children and explains the background of the Inclusion Support Subsidy which was introduced by the government to encourage child care providers to accept more children with special needs.
There are also a range of government respite services available including through the National Disability Insurance Scheme (NDIS). Now, I have never used a government respite service so I cannot vouch for them but if you have no-one else to turn to I would recommend giving them a call to see if they could assist in providing you with some much needed time away.
6. Keep an open mind. This one is deceptively simple yet surprisingly hard to do. We all travel through life holding certain expectations and beliefs and judgements. When you receive that life changing diagnosis for your child it is understandable to cling to what you know, much like clinging to a life raft in a storm.
However, don’t close your mind to alternative treatments or opinions just on principle. Keep an open mind, read widely, talk to people, consult with experts. Remember this is about your child, not about you. Do your best to overcome any personal discomfort or embarrassment you may feel and get on with the job of doing what’s best for your child.
Because this journey is their journey. We share the highs and lows with them but the destination is theirs’ to reach. We help guide them and make decisions along the way but they are the ones who will ultimately continue down their own path when they are older.
We owe it to them to help light their way by putting aside our own issues and giving them the best chance to find their own unique way in life.
I hope this more practical list helps you as a special needs parent or helps you assist others in adjusting to this journey.
Again this is by no means an exhaustive list and I would love to hear from you too. What advice would YOU give to someone in this situation?