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.
Be proactive
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.
Don’t compare
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…………………….
Thank you Corrie for such wise, heartfelt, real & encouraging words. Whilst I don’t have kids, I taught K, 1 & 2 for years & often had children with additional needs integrated in my class. Following on from your picture ideas, I always used pictures or key words (& clocks at age appropriate) for our daily routines. All children love consistency even if they don’t appear to and a visual timetable was very effective. I always had a row of question marks I would add to some days then do anything from stop lesson & sing a song, run round oval or……this was helpful so when those extra things cropped up like fire drill, assemblies, photo days etc, the children were better prepared for change of routine. Taking time to quietly explain or prepare for unknowns without overdoing it and adding stress were great too, giving social stories such as preparing for excursions could help calm children in readiness. Seems like you are really being proactive and wise in balancing family life.
Oh Corrie…tears here now. I was doing all right till you got to the bit about your sewing room…that is exactly what we do on the weekends! Your journey sounds very similar to our journey!
If you get a chance have a look on the sidebar of my blog as there is a verse there written by a Mum who has a child with a disability and she sums it up perfectly!
Enjoy the journey Corrie….lots of twists and turns in it!
Love to you, Dzintra
This is informative and just lovely, written by an obviously very caring mummy. I completely love the comment towards the end about the overlocker! It made me laugh. I can very much relate. I have 5 children and one with special needs, but the needs are in an area not widely known about, which can be a little tricky. Thankfully I am a learning support teacher part time so can accommodate her needs at home fairly easily. I definitely agree with Robyn’s comment above with regard to social stories and visual timetables. These are very important and can help to avoid many a meltdown! Having a rhythm to the days and weeks is a great help too.
I have a very similar journey to you and reading this bought a tear to my eye . I think I can relate to everything and couldn’t of said it better myself . I to try not to dwell on it as it is an emotional roller coaster ! I use to feel like I had to explain to everyone at the beginning about his special needs but now I don’t worry as much ! People try to understand but unless they have been through it it is hard for them to truly understand . Thanks for the post it makes you realise you aren’t alone and a lot of families have the same daily challenges
Hi Corrie. Thank you so much for writing this. Just last week my 3yo daughter was diagnosed with ASD. I can relate to so much you are saying. I too am a rookie! I found a wonderful closed FB group in my area I can talk to and gain support. I am still a bit lost what to do until we meet with her Paediatrican next week, but you have given me lots to think about. I’ve realised there are struggles and it is exhausting, but each day she shows me signs of growth and development. The smallest thing can make me beam with pride. In some ways, there are more opportunities for milestones which make up for the meltdowns. I am so inspired by you. I also do crafts and have my own small home decor business which is my ‘me time’ and I would be lost without it. All the best.
Beautifully written, well done. With my special needs child now 9, at school and thriving I can say that the years of appointments, therapies, meetings etc were all worth it. He is quirky and funny, loving and very loveable, he teaches me a lot (mainly about whatever the current topic of interest is!) and I love our time together. I’ve learnt lots and I’m still learning, I’m glad he’s my son and that I’m his mum (and his manager, advocate and all the rest!). Love to all walking this special journey.
Thank you Jennifer!
This is great and so helpful for people starting out …. One thing I’d be interested to hear us how you balance it with the rest of the kids needs …. Fitting in time for all of them
yes! good question! specialist appointments I book all in advance and just have the other 2 with me, therapists come to the house or preschool, at home we do things during play time and the big kids help, at night time we take melatonin so that I’m not up till 1am getting them to sleep and she tucks the big kids into bed if she’s still up. The good thing is when she’s happy she has a very easy personality and goes with the flow. The big kids are wonderful play buddies and she adores them so we get lots of outdoor time to tire her out and play. I guess in a big family everyone works together. We don’t use any respite because it would only cover her but we have 2 babysitters who we use so we can take the big kids without the little kids or for activities or when I need an extra pair of hands.
Much love and compassion ♥
For many years we had a gorgeous little boy with us that had some special needs. I remember well the merry go round of therapy appointments. I also remember only too well the frustration I felt every time we would meet a certain mum at an after school activity that one of the other children did. Every time without fail she would tell me “oh it’s just a boy thing….one of mine was exactly the same & he just got better as he got older, he’s fine now”. Somehow I managed to just smile & nod…..I didn’t dare open my mouth for fear of what I might actually say if I did
some people just don’t realise how unhelpful their comments are. You seem to be doing brilliantly & I love how you are taking time out for your gorgeous girl to just be a little girl sometimes & enjoy just being one of the kids not the “different” kid.
Hi Corrie,
I’m not sure if it would be appropriate for you little one but have you thought of Auslan? Perhaps signing could help her to communicate while she’s getting the hang of saying the words?
I worked with an autistic child who has speech difficulties and it helped her a lot so just thought I’d pass the idea along.
Best wishes always,
Sarah
Hi I love your article ,I am an early childhood teacher who has supported families through the diagnosis and therapy in the early stages , there is definitely grief then moving on and if you don’t feel your diagnosis isn’t quite right keep searching for Drs that understand your child’s specific needs.but do remember to celebrate the child .
Just to also mention that you can Go to your doctor and have access to five free speech, dietitian, pysch, ot etc per year under the mental health scheme ( this is available to all having a few issues – you don’t need to be solely special needs) also great to use for us mothers that sometimes need someone to talk like a path who can help by just listening to you download :(. Lovely post – well done 😉
Thanks Corrie for your informative, and as usual, honest post. I do not have a special needs child but I’m sure there are others out there who are feeling overwhelmed and guilty. This post will help them, I’m sure
That was a beautiful heart warming post that brought tears….you are strong girlfriend and she is oh so lucky to be so loved and supported by your lovely family. My own tip that I thought of after reading about two of them up to mischief was to role model off him and let him be her coach. Sometimes child role modeling works really well and the often do in a special needs group.
Thank you Corrie. What a beautiful, brave, helpful and insightful post.
just beautiful, Corrie xx your Elodie is just gorgeous and so very lucky to be born into such a loving family.
This is a beautiful post, you are such an inspiration. Thank you
I really enjoyed reading this and I am so impressed with how much you have learned so early in your journey! My daughter is legally blind and high functioning autistic and now 22 years old. It seemed she never fit any of their placements, so they tried her in speech/language preschool, then put her in autism clusters. Looking back, I think she did best when we focused more on the visual impairment and they helped based on that. We actually had someone come and teach Danielle to play from the age of 8 months and until age 3, we probably had the best help you could get anywhere to teach her during these early years. This person came to the house, and I think you have that part so right… the more you can do in your home, the better. You can learn more as a parent that way too. I did not mean to goon about Danielle, but to tell you it sounds like you have learned fast and I am sure your daughter is going to go far. I wish I would have considered doing the off time from therapy like you did. When she was around 8 or 9, I finally started to back off (she had some therapy or class every day). as it seemed to me that we were always working on something and trying to “fix” her. I did not want her living her life thinking she needed to be fixed, as she was and is a delightfully entertaining girl with many talents and a very giving heart.
My daughter is currently staying at an independent learning center about 1 1/2 hours from our home now and I miss her so much, but hearing the pride and excitement in her voice when we talk on the phone and seeing her hanging out at her friend’s apartment with her boyfriend when I visit. I am not sure I really believed she would live on her own, without me checking her once a day at least, but it is starting to look like I was wrong. I may be an Empty Nester soon and I am not sure how I feel about that! I am proud of how far she has come and I realize this is what I want, but how do stop obsessing over a person after doing it for 22 years?
I did meet a 2 year old that is not speaking yet through some friends, and I have volunteered to babysit her for free while her parents go out. There is just something comforting about repeating a word over 10 times before I give her want she wants… it brings back warm memories (like I forgot how frustrating it was so much of the time!). Maybe I will help her start using words or maybe I will just enjoy a beautiful little girl while her parents get a rare night out.
I would have thought I would be trying to go have crazy adult time with this freedom I never expected… Am I crazy?
As a mother of a daughter with a disability who is now 24, I hear you. Blaming myself is the one thing I still struggle with after all these years because I had undiagnosed severe post natal depression and felt I couldn’t give my baby and little toddler what she needed at the time, a mother. I do still grieve but try to focus on the achievements of this beautiful young woman who is a part of our family. Like you are fighting for your daughter, I have never stopped fighting for my daughter to give her what she needs. I spent hours in appointments over the years, spent hours trying to explain to teachers how to help her both in primary and secondry school. Some teachers were sympathetic and helpful, others were not. It was frustrating for me but far more frustrating for my child because she was the one who needed the understanding and patience to be shown to her. I am stubborn and determined and I never ever give up looking for things and ways to help my child, now a young woman. I spent hours at Centrelink refusing to leave until they had answered my questions, given me the information I requested and the results I wanted when she had left high school and was trying to get a job. The reward I have for working hard for my child is the fact that she has part time work in a supported wage position at a large supermarket chain. She is driving and has just gotten off her green P plates. She has come so far and doing things we never imagined she would be able to do. She still has melt downs, sessions of crying from extreme frustration and as hard as it is to deal with, I try to remind myself how much harder it is for my daughter.
You are doing a wonderful job with Elodie and she is lucky to have such a dedicated mother and father helping her. I’m sure you have your reasons for calling Elodie “little miss” but as she has such a beautiful name, it would be so lovely to hear you use it when you post about her.
Thank you Anne! How lovely your daughter is driving and thank you for sharing about her. Don’t we know the frustration and melt downs here too. I can’t imagine what the future holds. And my beautiful girl does have a pretty name but unfortunately if to google any of their names it brings up all of the hate that had been written about us and I don’t want any of my kids to find that later on so made a decision to take their names off the blog for most of the time. No one needs to read anonymous people writing awful things about them and she wasn’t spared
thank you xx
Hi Corrie, you have done a great job here. I would like to add to your comment about grieving. There may be times where you may have grief strike again, especially at times where others reach milestones, and your child is nowhere near. That is when you need to focus on the achievements you have made and celebrate the person you have, not the child you dreamt of having. I also found it helpful to have a support group of mothers/ parents in similar situations. We had a support group led by a social worker, discussing issues, solutions and anything that we wanted. Discussions gradually progressed from being focused on how to support a family with a child with a disability to being a friendship support group where we discussed anything and everything. Our journey to a different destination began 26 years ago. I hope your family’s journey is as good as ours has been.
Hi Corrie, I was mum to a beautiful young man with Down Syndrome for 18 years. Sadly we lost him to leukaemia. The biggest thing I learned was that when I just let him be himself and not conform to anyone else’s expectations, he shone so bright it filled us all with more joy than we could have imagined. There are no words for the happiness he brought to us. There will be good days and hard ones, but isn’t that the truth for any of our kids? You are doing an amazing job x
I’ve been through this journey (little boy, 5 1/2 years old) and still working. Still progressing. I would like to add–everything does get better. Progress still gets made. I used to write little notes in margins of notebooks, about things I WISHED he could do. For some reason I even dated these little jots of scribbling. I happened to come across them the other day. My little boy had accomplished so many of my “wishes.” It made me realize how far he had come. There is so much fear and extra Work involved. But I try to see that in some ways his babyhood has been extended for me and he is such an innocent soul. I feel blessed to have him in my life.
Hi Corrie,
I know you wrote this post a while ago. I was hoping to get the name and number of the doctor you mention here. Also is he/she a pediatrician?
Thanks Corrie and happy new year. Here’s to a wonderful year of progress for our children.
I know this is an old post …. but we received our family’s second diagnosis yesterday and I found myself looking for it (you’ll see some not-so-nice looking google search terms, but I promise it was not for poking my nose in your business, I was looking for your words of wisdom!). Thanks for posting this, I found it helpful. It’s nice to hear from a fellow mum who’s walked the path.
you are most welcome, I don’t google my name or blog trust me, learnt that a long time ago:) I’m glad it could be of help and hugs xxxx take care of yourself