One of the things that I do love about my blog is the beautiful emails I receive from lovely people. And one of the big topics is when friends and readers discover their child has special needs. Whether it’s something they were born with and/or something that has just been diagnosed. It’s a shock, a time of confusion and questions and grief and acceptance and also trying to figure out what help is available and how you can access it. Our very first instinct is to get in there and try to do whatever we can to help our children. And one of the biggest shocks is perhaps when you are given the brochure for early intervention and you think great I’m going to call them and then you are told well you’ll go on the waiting list. It was 6 months for us.
Now what I do know is that parents want to start getting therapy now. They might be told of the waiting period and the sad fact is that many families are waiting just to get a diagnosis. So what can you do? Here are a few things that I hope will help you or someone you know.
Find your nearest early intervention playgroup. If you live in Sydney then look up Lifestart and its various playgroups. Wherever you live in Australia you can look up a MyTime playgroup. Your paediatrician or local area health will also know who to put you in touch with.
If your child has a speech delay or perhaps low muscle tone and no other underlying condition then you can go on a waiting list or access services through your local health area. We were able to access hydrotherapy and a physio group for one term and it was wonderful. If you have a formal diagnosis/underlying issue then you won’t be able to access these services but this can be a great service to access especially if you are waiting for a formal diagnosis. Contact your local area health
Go private. Now this is not an option for everyone but what if you went to a speech therapist or physio or OT and got some great goals and activities that you can do at home. We are on a break from physio and OT and working on skills at home, the trampoline, swimming and are grateful that the regular sessions have made an improvement. The early days of speech were really about how I needed to be doing things at home and improving communication. You can claim 5 visits per calender year through your Medicare via a Chronic Disease Management Plan (formally Enhanced Primary Health Care Plan). Basically you visit a GP and they will write a referral for the therapist and you will pay out of pocket but then take your receipt to medicare rather than your health fund (if you have one).
If you have a formal diagnosis then apply for the Carers Allowance and/or Payment. See if you are eligible for payments through Better Start or Helping Children with Autism Package or perhaps you’re lucky enough to live in a region receiving the NDIS trial.
Discuss with the paediatrician/GP/an existing therapist what the greatest need is and focus on that until you can receive more assistance
If you have a child of preschool age then ask your preschool to apply for Inclusion Support which helps with the cost of an extra staff member to help your child. We have benefited so much from a teacher’s aide at preschool and she came with us into a new room at preschool and we’d be lost without her. Ask around for a good preschool that will be supportive and help you implement the things you are doing at home.
When speech is a big issue then focus on communication with simple signs and/ or pictures (using photos that you have taken/PECS or Boardmaker).
Get down on the floor and get into play. Whether it’s wooden toys or their favourite toys, you might need to go back and teach your child how to play with toys. Things that you might have assumed that they have learnt will need to be expressly taught to them. So get back to basics. Model language for them, how things work, grouping colours together and give plenty of opportunity for them to copy and talk if they want to. I talk non stop so have had to learn to sit back where necessary and also when to get involved and teach. There are loads of great games and activities that can help with fine motor and sensory issues and we love kinetic sand, matching games, colours and toys from Finlee & Me, Educational Experience and Modern Teaching Aids. Also see if you have a special needs toy library near you. And we love m&m’s for teaching colours too. Cheerios are also great to thread onto string as an OT activity.
Talk to other mums….whether you meet them at a special playgroup or in a waiting room find out where they are, who they are seeing, where is a good preschool, what schools they are looking at and you’ll learn something. I’ve learnt so much from other mums.
Just keep pushing on. Whether you’re still trying to get a diagnosis or find the right person to help you just keep going. Keep records of everything, every Dr you’ve seen, assessments and so on. There is someone who can help you or will know what is wrong (you might not necessarily find out the cause) but you do have to keep pushing on and not everyone will agree with you or have the same sense of urgency that you do. And you’re not alone which is why social media can be so wonderful.
Fill up your social media with all the wonderful resources that are available – mums can teach each other so much and are in the same boat or have been there and have a wealth of information. You can join closed groups for your child’s special needs too. A few great pages on Facebook are
Home Schooling Special Needs Australia
Resources for Special Needs Australia
NurtureStore – not special needs but lots of great ideas
and search like crazy on Pinterest too – I’ve created a board with a few ideas and things that have caught my eye here
Some great tips here. I have a foster son who has a lot of issues that we are waiting to get help with. It is incredibly frustrating to see him struggle. Thanks for sharing these ideas. Lynda xo
Few have made me feel more emotionally connected like this gift you gave us. We know a little about what you have been through with a highly sensitive child and disability so
Heart felt thank you. I didnt know all the support out there just because its hard when your merely trying to do ” the basics ” and it can be an emotionally but fulfilling journey. Lonely and no one wants to be misunderstood as each child is a unique creation from above.
Thanks Cory
Ingrid
Maisonmummy and mouse loved it
Wonderful advice
Would you believe my daughter received a diagnosis 4 hours ago and then I see this on my blog feed!! I am reeling with this news and have no idea what’s next. Thanks so much for this timely post.
Sue feel free to message me if you want any advice or a confidential ear xxxx
Another terrifc post Corrie & one that is so close to my heart. All the tips and advice here are fantastic. It is like reading about my own journey, especially with therapies and preschool involvement. I find it is such a hard slog, but also very inspirational when you do eventually find something or someone that works so well for your child, our preschool has been invaluable, I really don’t know where we’d be without them. And you’re right other mum’s & social media is a lifesaver at times, if for no other reason, than to make us feel just a little less alone on the journey. I have learnt lots through these avenues…and of course taken plenty of knowledge and support from yourself & your own experiences. So thank you again for that
xo
We have been through a few different types of therapy with various foster children. After years of saying that I felt something wasn’t quite right I have finally, just this week, managed to get the school & our caseworker to see that there are issues we need to watch & possibly assess. The child in question is 12 & has been with us since she was 6 months old, I am very persistent !
Don’t forget the Better Access to Mental Health care plan. You can access 6 visits to a psychologist or even an OT (registered with medicare for mental health) for example. After that you can be reassessed and access 4 more. I have 3 with ASD and one of those also has cerebral palsy but they have all out grown the funding available and we are yet to have NDIS. We use our private health extras first, by the time that runs out we are over the medicare threshold and get 80% of the out of pocket expenses back.
Something else to consider is looking for a way to apply for funding. We have funding for my older son through Mission Australia and my younger son accesses funding via a local charity for kids with brain injuries.