When you receive a diagnosis for your child, your life transforms in an instant.
In a moment your life completely and irrevocably changes. In that moment, you go from being the parent of a “normal” child, with typical hopes and aspirations, to having those hopes and dreams dashed and crushed beneath your feet. The life you expected, the path that you had laid out for you and your family is now a maze with no clear direction or conclusion.
I can still vividly remember all those overwhelming feelings that hit me with the first diagnosis we received over 10 years ago now. There was shock, disbelief, anger, guilt, dismay, panic, denial, despair, hurt and confusion, all there, all at the same time.
Over the following weeks, months and years those feelings remained, although they varied in prominence and severity – but they never went away.
Obviously my son’s subsequent diagnosis of autism when he was 4 years old, plus my middle daughter’s more recent autism diagnosis also hit me hard. I confess, I grieved these feelings out again for each diagnosis and it never got easier. I try and put on a brave front but I still feel all these emotions to this day.
Now, I just manage them better. I try to put them to one side and I focus on the positives and moving forward and giving my kids the best I can. But those feeling will always be there – I’ve come to realise that’s just how this whole special needs parenting gig rolls.
So, whenever I hear about others receiving similar news, I want to find the right words to help them on the start of this journey. I want to give others the advice that I wish I had received when I first hopped on this unexpected ride.
With this in mind, here is my take on the things special needs parents need to know when they embark on this fork in the road.
Don’t be afraid of your emotions
You need to recognise and accept that everything you feel when your world is first thrust upside down is natural. In order to accept the diagnosis and move forward to give your child the best possible outcome, you need to acknowledge your feelings and move through the stages of grief that will follow.
It is fine for you to cry everyday – I did. It is fine for you to seek professional help if you feel you are not coping – I did. It is fine to take some time out to try and work through everything – I took 5 weeks leave from work when we received Gilbert’s autism diagnosis. Don’t fight your feelings, accept them and then use them to move on.
Know that you are not alone
There are others out there dealing with special needs too and it’s important to connect with others facing similar challenges to you. I was not comfortable with this at first – I didn’t feel I needed help and thought I could do this on my own. But it is only in the last couple of years (coinciding with finally joining some groups myself) that I have felt more at peace with the diagnoses and how we are dealing with them.
Find a support group and have the courage to join up
If it’s too raw and confronting to meet with others in person, find an online group to join. I have found an albinism group as well as many autism support groups on Facebook alone and they are a wealth of information, personal experience and support.
There are also fabulous special needs parent blogs out there, not to mention the many, many specialist pages providing advice, assistance and support to the families of the newly diagnosed. Find them, join them and take in information at your own pace.
Make time for yourself and for your partner
This is not easy but you need to give this a go. You will not be an effective carer for your child if you are mentally and physically exhausted. You need to look after yourself and that means trying to find some time away AND not feeling guilty about it.
If you are in a relationship you also need to find time to spend with your partner. This is what we have struggled with the most but it’s something I am determined to get right. The sheer strain of dealing with the daily demands of a special needs child is unbelievable. At times you have to consciously set that aside and devote yourself to each other, else you’ll lose yourself and your relationship. It’s that simple.
Remember, regardless of the diagnosis, your child is still the same precious person they were yesterday
Do not let a diagnosis or a name or a label change how you love and cherish and protect your child. Your child is more than just a condition or a diagnosis. Celebrate their achievements, recognize their strengths, support their efforts. They will be all the sweeter, particularly if you never expected them to achieve it.
Believe in yourself and in your ability to make decisions regarding your child’s treatment
You are your child’s best advocate. You will feel powerless and overwhelmed at first and you will wonder if you will ever be able to have the knowledge to make treatment and therapy decisions for your child.
Never forget that you know your child best and you will always be their best advocate throughout your journey. Believe in yourself and trust your instincts when it comes to making decisions for your child. You may not be an expert in your child’s condition but you ARE an expert in who they are, which is just as important.
I hope this lists helps you as a special needs parent or helps you assist others in adjusting to this journey.
This is not an exhaustive list by any means and I would love to hear from you too.
What advice would YOU give to someone in this situation?
Beautiful post! I think there are lessons in there we can all use as parents. You children are so lucky to have you. Rachel x
Thanks for your encouraging words Rachel. I think I’m the one who’s lucky in my family – I have learned so much from my kids and from being on this journey. Thanks so much for reading and commenting, reading your words has really made my day!
Such a thoughtful post and fantastic, helpful and gentle words and advice for anyone going through a similar experience.
Mandie, thanks for your kind words. My post came from my experience and from my heart – I hope it can help others embarking on this unexpected journey.
Thanks so much for taking the time to read and comment, I really appreciate it.
Wonderful post. And great advice.
I’d like to add that trying to get yourself organised is very helpful. Once your child has a diagnosis you’ll most likely start accumulating specialist reports, assessments and other pieces of paperwork. Get yourself an expander file and keep it all together. You’ll be amazed how often you are asked to bring copies of these things to school etc. If you’re feeling really keen, you could even make photocopies of the diagnosis paperwork or other key documents so they are on hand and ready to go.
Liz, such great advice, thanks for sharing.
I know i’m not the most organised person in the world and my life would be so much easier if I had have kept things in order from the very beginning. There is an amazing amount of paperwork involved in the special needs world and every new therapist or specialist needs everything that has come before them. Having it all in order from the start will go a long way to reducing stress and anxiety down the track.
This is a great reference Kirsty. As a Speech Pathologist, I have seen many parents grappling with similar diagnoses – at varying stages of the grief process. I have also had friends go through similar. Very practical advice.
Thanks so much Julie – that means a lot to me. I really hope these points can make a difference. I know how lost I felt in the beginning and how I would have appreciated having something similar as a point of reference. Thanks so much for reading and taking the time to comment.
Great advice for people Kirsty. I think Number 6 is one of the most important – having the confidence that you know your child best and you can be their voice.
#teamIBOT
It took me a long time to understand #6 myself – and it is one of the most important. We may not be medical professionals but we do know more about our kids than any specialist will. We should have the confidence to advocate for our child based on that knowledge, as well as on gut instinct – following my instinct has not steered me wrong yet!
Wow. Some fantastic Advice there. Being a parent is hard work, but being a parent of a child with extra special needs would have to be even harder. It is important to remember that as parents- your feeling s matter too and you need time for each other.
Its also even more important to seek out support- even if it is just so you dont feel alone in this new journey that God has decided you are perfect to experiance.
Thanks for your thoughts Lisa. I think when we become carers it is so easy to lose sight of your own needs as a person amid the focus on your child’s requirements. I haven’t mastered this part yet but I am trying to be kinder to myself and not feel guilty when I do have time away. If I can’t care for myself how can I care for anyone else? Thanks so much for taking the time to read and comment, I really do appreciate it.
Great post. This is why i love the internet. There are always people willing to help and share their information. mother forums are great to be apart of. I have been apart of one for 8 years now and we are all friends.
Thanks Salz. The Internet is really useful, particularly if you are someone like me who finds the mere thought of going to support meetings intimidating. Finding others facing similar challenges on Facebook and being able to ask questions and share the ups and downs of our special journey really helped me come to terms with everything. I’m so pleased you have found real friends on a forum too – that’s something special.
This is fantastic Kristy. So helpful and such a gentle wisdom you have shown.
Thanks Jess – and thanks for sharing this too, I really appreciate it.
Great post. I would also add you may go through the grief, anger etc again at various stages, not just in the beginning.
You are spot on E – those feelings never really go away. I think you learn to manage them better after a while but they can still emerge from time to time. Thanks so much for pointing that out.
This was a wonderful post. I am currently in the early stages myself of diagnosis’s, therapy and seeking support. I have seven children and every one of them struggles with something. Developmental delays, speech delays, sensorineural hearing loss, asthma and our oldest has a pending Aspergers diagnosis and a sensory processing disorder. It’s tough to juggle and I agreed with everything that you said. It was all so relevant to what we are going through. They were the main areas we struggle through. I also agreed with LizC about keeping our reports organised. I have a folder with dividers to keep all the kids reports etc and have more recently found a health record program for the computer that I am trying to keep a copy of things to. A diary for appointments is fantastic as well.
Veronica, I am in awe of what you have on your plate, no wonder you need to be ultra organised to keep up with it all. Liz’s point about keeping reports sorted out from the start is a great one – if you don’t get on top of it in the beginning it can quickly get out of hand. Can I ask what health record program you are using? I need to get the kids’ records in order and doing it electronically sounds like the way to go to ensure things aren’t lost. Thanks again for taking the time to read and comment!
Minerva Health Manager. You can record all of their details and even email reports and files etc through to doctors. It has a seven day trial, which I am currently using and so far has been pretty good. It looks like it has a lot of potential to makes things a lot easier once I update it completely 🙂
Thanks for that Veronica – I will have to go an check it out.
Fantastic post! 🙂
Thanks so much Jane – I’m just so pleased that people are getting something out of it. Thanks for taking the time to read and comment, I really do appreciate it!
This post comes at a great time for me. My son was diagnosed Aspergers this week. It’s all very fresh and new to me
Myra, I hope it can help in some way. I know how lost I felt at the beginning so I can only imagine how you’re feeling right now. Knowing that I was not alone helped me then so I hope that goes a little way to helping you too.
Wonderful post Kirsty – have shared and hope people will pass it on to someone who needs to read this.
Deb, thanks so much for sharing this – I really do hope it can help someone who needs it. Thanks for getting it out there!
This is such an important post kirsty, not just for parents of children with special needs, but all parents. Some very pertinent advice.
Thanks Kate, I’ve been mulling over this one for a while and am really pleased so many people have had the chance to read it. I hope it can make a difference for people starting on that journey – it can be such a lonely, sad and overwhelming one.
Thanks Kristy for writing this! We are starting a special needs support group for homeschooling parents here in BC, Canada and we did an exercise like this one. I have shared your article with our members, feel free to read our “letter to myself” article on our website as well :).
Hester, thanks so much for sharing. I think what you are doing there is so needed – homeschooling can be such a lonely and thankless road. Having people to support each other through it is such a wonderful idea. I will definitely check out your website – thanks so much for taking the time to comment and share!
What a lovely helpful post Kirsty, Thanks so much will pass on to sister in law who is getting our nephew diagnosed as this is great advice…
Corie, sorry to hear that your nephew is in the process of being diagnosed, but hopefully he will then be able to access the support he needs.
My nephew as well as 2 of my kids are on the spectrum – it seems to run in families, doesn’t it? Take care and thanks so much for reading and taking the time to comment.
Great advice Kirsty, I can see so much of what you’ve written in one of my sisters.
Thanks so much Carli – I think we all have special people in our lives. I feel blessed to have mine, they have certainly enriched my view of the world and have made me a much better person for it.
Fabulous post with such great advice. You’re strength and experiences will be very reassuring to others starting out on their journey x
What lovely words, thank so much. I hope to write more posts like this one as it’s clear that more needs to be written to support the carers of those with special needs. Thanks for taking the time to read and comment, I really do appreciate it.
The being able to grieve your parental dreams and hopes part is so important. Thank you for putting that out there in words.
I think that was the hardest thing I faced when I began my special needs parenting journey – knowing that my son would never be able to drive and that I would have to put away all the traditional hopes and dreams that I held for him. But I did need to take that time to grieve before I could embrace the new dreams we are making together and be the mother that he needs me to be. Thanks so much for reading and for commenting.
I fell like bawling reading through this list! I wrote about how experience here
http://withatouchofpretty.blogspot.com/2012/12/autism.html
Well, you reduced me to tears with your post Cate! It was beautifully written and so evocative of everything you are going through – I hope things do get easier for you all in the New Year, the first little while is really hard but it does get easier to deal with in time. Take care of yourselves as well as your sweet little man!
Number 6 is great. Everyone needs that reminder from time to time.
Ever since I had my own diagnosis I see more and more traits in my boys and wonder if I should pursue diagnosis. On the other and they are not really having problems at school and I’m not sure what to do..sighhh..
Your children are so lucky to have you supporting them and accepting and loving them unconditionally. You’re doing a great job. xo
You should be proud of this post and be even prouder to be such a great mum.You are credit to your family. Love this, it will help so many.
Fantastic post and I can see why you are proud of it.
A very raw and honest post. There is some great advice here.
Hi Kirsty,
A very well written and thought out post written from the heart by experience. May your days have more sunshine than overcast skies and may you continue in your quest to help people and families on their same journeys. By so doing I’m sure that you also will find help and ideas and suggestions.
Take care,
Alexa from Sydney, Australia
Blogging at Alexa-asimplelife