Newly Diagnosed …. What Now
You are probably feeling at this moment in time after a new diagnosis like somebody has pushed you off a 10m platform into a pool and you don’t know how to swim. This is normal. Every parent who has come before you and those who will follow all have this feeling.
I can guarantee this journey you are about to undertake will be one of the hardest things you have ever had to do in your life but hopefully we at The Sanity Space can throw you some floaties.
We won’t be able to provide all the answers, nobody can, because every special needs child is different, they react differently and have different needs to the others and so do their very important families. This site will give you the starting point and a central access point to find those services and the information that will best help your set of circumstances.
At this point in your journey I have some quick suggestions based on my journey (link to my story) that might help.
Be prepared for grieving.
This might sound odd because nobody has died. You head though will have to deal with the fact that the child you dreamed of, that you had plans for doesn’t exist in that imagined way. This will hit hardest at first but it will occasionally pop up at random times for a very long time. My daughter will never marry, never have her own family. I grieve for the life she won’t live, the partner she won’t meet, the love she won’t find and for the children she can’t have. This of course depends on the disability and the diagnosis.
Don’t blame yourself.
The “did I do anything wrong” will come into your head but it isn’t good for your mental health. Your mental health is more important for guiding your family through this than anything else.
Try not to feel guilty.
This is something I have struggled with. I feel I don’t have enough time and patience for my daughter. I feel like I have let down her little brother by never having the time for him that I should have because I am so busy with his sister. I feel guilty that he is sometimes embarrassed by his sisters behaviour. It is such a normal human response but again doesn’t actually give anything productive to your family and I can guarantee that if you are a parent that cares about these things then you are a good parent.
Take some time out for yourself at least once a month, even if it is only for an hour. This journey has the potential to burn you out very quickly. As hard as it is, it is important to make sure you have time to put yourself first. Tag team with your partner, ask a family member for help or seek out some respite. Even if it is as simple as going out for a coffee, getting a massage or a pedicure, or having a beer with the boys (for the Dad’s). Maintaining something normal from your life before kids is crucial. I failed at looking after myself for a long time and it took a lot of years of paying for it to come out the other side.
Make time for you and your partner.
For those that are in a couple having children often shifts priority from each other to the children. This happens even more so when you have a child with special needs. Every waking moment seems to be about them and getting through the day.
As important as all this is you need to remember that if your partner is important to you that you need to make them a priority. Like with taking some time out for yourself, make sure you dedicate some time to your relationship.
Make the most of little moments, even if it is one daily conversation focused completely on each other and not anything to do with children.
Disclaimer : note this is our journey and our views on how we best dealt with our lives and the challenges of the journey we face.
We offer these views in the hope they may help you, but this is not professional counselling or advice and should not be taken as such.
At all times seek professional guidance and assistance.