As we come to the end of the year I think about how far we’ve come with our little miss and how far we still have to go. It’s been about 1 1/2 years since we had the doctors confirm that our little miss has a disability and we’ve been doing different therapies and made progress ever since. We are still doing tests and still seeing doctors but what I have learnt might be of help to someone out there in the same shoes or at the start of their journey. And that’s kind of the best way to describe it. You’re on a journey, a different path in some ways to children who have no additional needs, and it’s a bumpy ride but there are plenty of rewards. And if you have advice then please leave a comment and let us know………………
grieve first then make peace
Even if you’ve known for a while before you get a diagnosis or report from the drs there is still a sense of shock and grieving. Things will be different, things won’t be easy and you will go through a range of emotions. I blamed myself and yet have nothing to blame myself about but I would still question everything from the pregnancy to delivery to everything. Allow yourself to work through emotions but it’s important to make peace with the situation so that you can move forward. If you need help with this then talk to your dr to talk through how you are feeling.
Make sure you know what you are eligible for and use it
Funding is all over the place at the moment and there are lots of changes. If you don’t have a ‘tick a box’ diagnosis then you might be struggling to get any funding for therapies and dr appointments. This is where we are at. So you’re going to want to apply for the carers allowance and use that towards your costs. It took me a year before we applied, we were knocked back and we appealed. Don’t let a rejection deter you.
If you’re on a waiting list start doing things today
It was 6 months before we got into early intervention and that only provided a short speech therapy session every 2 weeks that was a total disaster because it always ended in tears. Find special needs playgroups near you, find out what early intervention can offer while you are waiting. If you can afford to find a private therapist whether it’s speech, OT or physio then do some sessions, get lots of advice and do things at home. If you have private health insurance then you should be able to claim the amounts you have paid (up to a maximum per year). You can also claim some expenses through medicare (I think it’s 5 or 6 per year) and you’ll need a referral from your GP for that. Determine what is your child’s greatest need? is it speech, then get some speech sessions under your belt and get out the toys and the books at home and incorporate the tips into your play time. I think the first year of speech was me learning what to do to get little miss talking.
Don’t turn your child into your project
I love this advice from a recent course I did. It’s so easy to try lots of therapies and want results and you can easily go to appointments or therapy sessions all week long and forget that your little one is just that – a little person. He or she wants to play and just be a kid like any other kid so don’t overdo it. I do know that there is a window of time where therapies make such a difference but don’t get so caught up in it all that you forget to just let your child be a child. We stopped going to therapists half way through this year and had everyone come to us or preschool. It costs more but we get more out of it because she is happy and isn’t in office settings and travelling in the car.
I’ve found therapists through word of mouth and the internet. Join facebook groups for your child’s disability, find people who live near you, ask what courses are available through early intervention. One of the best I’ve done is called PACC – parents as case co-ordinators. It was about 4 weeks from memory and is all about putting you in charge to do what is best for your child. At the moment I’m doing a toilet training course run privately but I’m getting so many tips and help that I know will help me toilet train when it’s time.
Take breaks from therapy
A reader told me this one and she was right. We are on a break from physio after great results. We left not being able to jump on two feet but decided to ramp up our swimming instead. We can now jump on two feet and will go back to physio next year to work on some skills for preschool and school. Picking up physio means we’ll take a break from OT until the second half of the year. So plan things out, talk to your therapists and give little ones a break because often it’s in those breaks where you see the progress.
Focus on the greatest need
If your child isn’t speaking then make communication a priority. We will be doing weekly speech sessions next year which won’t come cheap but we’re seeing great improvements and are going to build on that. Taking photos of simple foods and objects is a great way to start communicating with your little one if they are not talking. PECS, Boardmaker or just your iphone to take photos, a printer and a laminator will have you on your way. Just google for tips and advice.
Don’t be afraid to change doctors or therapists
The hospital recommended a dr to us who kept us waiting up to an hour, wouldn’t give me copies of results and just wasn’t all that interested in helping us. My neighbour told me about a fabulous one and bingo. Someone who took an interest, did tests, was up to date with everything and for the first time told me what we were looking at. I now recommend him to other mums who are looking for a caring paediatrician who makes a difference. We’ve had some wonderful therapists who little miss hits it off with and some disasters. Don’t feel that you are committed to anything and especially when you are paying yourself. Don’t waste time if it’s not working and ask around for advice. If going into therapists offices is freaking out your little one then look at home visits for a while or at preschool or somewhere they are happy. For little ones there should be lots of play and fun to keep them interested and happy.
Incorporate their interests into therapy and playtime
Oh the number of times we’ve sat down to a puzzle with cow noises and other animals and someone is not interested and the body language is saying it all. Then about half way through the year and my little miss really started to love dora, frozen and palace pets. Bingo. We hit the jackpot. By incorporating what they like into therapy you will get the eyes light up and excitement about ‘working’. Because let’s face it they know you are making them work and for most kids it takes a lot of effort to repeat words back or climb up the slide or do what we want them to do. Printables, small figurines, iPad games and books will all help and even though we don’t need a lot of toys we make exceptions for little miss if they can be incorporate into therapy. Thank you Dora!
Live for today and not always worrying about the future
I could lie awake every night if I always worried about the future. Of course it worries me. What does the future hold? What happens when I’m not here any more to care for her? What if…… It’s so important to live in the now and take it day by day. Think about the next year or schools but don’t always worry about the future. It’s a long way away and you’ll forget to enjoy the day and fact that you have a little one with you right now who needs you.
Thankfully my little ones are all at different stages so I don’t really compare my little one to what they are doing but it’s easy to see a child the same age and then have this moment where you realise that you are so far behind. It’s natural to be upset over it but don’t let it take away from the beautiful little person you are raising. ‘Comparison is the thief of joy’. Commit that to memory every time you catch yourself comparing your special needs child to someone else. Focus on what they are good at – for us she is by far the most empathetic person in the family, has amazing attention to detail and can sit on task for ages. In fact when you see her colouring with the kids you’d never know anything was different. So don’t you be comparing or you’ll just set yourself up for tears and upset.
Don’t think that you aren’t doing enough
you will always hear about so and so who is doing hours and hours of therapy each day or someone else started therapy much earlier than you. We are humans and we are doing things differently. Our little ones need to be kids and we do the best we can. Start with an hour a day of play time, remember that just playing at the park or on a trampoline or reading a book with you is doing something. So don’t forget all the little opportunities you have to teach and be there. I’m starting to take notes of the little things that happen each week, like just last week cutting a piece of paper with the paper in one hand and scissors in the other. A huge achievment and something that we can do at home easily in play time.
Look for special needs activities in your area
This can take a bit of research but did you know there are dance classes, music, gymnastics, horse riding, art, swimming clubs and more for our special little ones. Swimming was a bit hard but we found a school that ran private classes for special needs kids, then we moved into their regular class with 2 teachers and then we got a place at a special needs swimming club called Rainbow Club. Use the internet to find your nearest school, private swimming classes might be your best option. We love where we swim, it’s a special place where you feel normal, it’s $100 a term and I look forward to supporting them more in the future. Get on the waiting list even if they tell you it’s long and make the most of what is available. It’s there for a reason and it’s wonderful to let our kids develop hobbies and interests of their own. You can also look up your local council and most in Sydney produce a booklet/pdf for people with disabilities with lots of information, school options, groups and more. Get on to it. I can’t wait to start gymnastics when we are school age.
Be prepared for people to say the ‘wrong’ thing
Thanks to Leah for reminding me of this one! I forgot! It’s all to do with ‘well meaning’ comments or people who have no idea. I have a big mouth so I know that sometimes I speak before thinking. And of course there are people who really do have no tact and say the wrong thing. Usually a stranger in the supermarket or something along those lines. Get ready for that. You will get looks when someone is having a major meltdown in public but I can tell you that happens with any of my kids. But it is especially hard when we don’t have a sign on our backs saying that a little one has special needs and a bit of compassion wouldn’t go astray. You’ll develop a thick skin, you’ll hear all sorts of things like they’ll grow out of it, don’t worry and my favourite – ‘X didn’t speak till he was 7 and now he’s a big wig at xyz so don’t worry’. Just know that sometimes people think they are saying the right thing or they don’t know what to say or they don’t know what you are going through. Don’t take it personally and don’t dwell on it. Even family won’t always know how to react and it takes time for everyone to understand. Be patient with people, if you have the time say something to them that is helpful and if all else fails end the conversation and move on. I do find that once people know your little one has special needs that it helps make things easier but you’ll always get that one. Or two.
Look after you
It can be exhausting. You are dealing with a child who needs your constant supervision, who might be frustrated that they can’t communicate or move. There might be extra medications to give. There are appointments and doctors visits. The financial strain. The feeling that you are fighting for everything. The slightest temperature or cough isn’t just something they will get over. It is stressful, exhausting, a worry and we put ourselves last. Have something that is yours and make time for it. You don’t even have to leave the house. If I’ve been on my own during the week and hubby asks what I’d like to do I just tell him to give me a few hours in my sewing room. A bit of quiet time to unwind….well so long as I don’t need the unpicker or rethread my overlocker.
And I almost forgot…just love them for being who they are
there have been times that if I was honest with myself when I wished I could make all of the problems go away. Just be normal. But at the end of the day what makes someone different is what makes them who they are. Love them as they are. For all the tantrums, frustrations and bad stuff there is so much good stuff and joy in there. Someone who relies on you for everything and loves you EVEN when they can’t say it. When I got the first ‘ I lah oo’ I could have cried. It still melts my heart. The eyes say it all and the eyes do tell me that I am loved. So of course we love our kids but be sure to love and accept them for who they are and all of their differences as it is what makes them unique.
What are your top tips? I know this isn’t an exhaustive list and I know that many of you are ahead of us in the journey but I really wanted to put a few things down because I receive lovely emails and messages from my readers with questions and thought this might help…………………….