What would I tell myself at the beginning of being a parent of a child with special needs, if I could?
To be honest I wouldn’t.
The person I was at the beginning of this, couldn’t have understood or handled it.
However, if I could meet me, I would say:
“You’re going to ace this. Being a parent of a special needs child will be really hard. But you’re going to do an awesome job.”
Then I might handover a booklet that when I was ready I could pick up and read.
Challenges and triumphs
What you are about to experience could be the most difficult thing you ever do.
It will be filled with difficult moments and huge triumphs.
Celebrate every win!
Don’t brush it under the carpet.
Tell your friends!
Post it on Facebook (if that’s your thing), even if they don’t understand they’ll know you’re happy and get excited with you.
Give yourself time to grieve from the losses.
Denial is only a phase eventually all the emotion you glossed over, will come back, and it can be even more difficult to process later.
You are going to be okay.
When your baby comes, you have the opportunity to get to know the most incredible little person.
They will begin to communicate with you in a way that you and your family know exactly what they mean.
You just have to spend time, watch and listen.
That’s all it takes to learn.
Diagnoses or lack of will pile up over time, but that doesn’t change who your child is.
It does change you.
You have the opportunity to decide if that change will be a good thing or a bad thing.
When you start to feel depressed or anxious, know that there are so many options and getting professional support is super helpful.
Don’t worry about what hubby or anyone else says.
Yes, you’re super strong but asking for help, & learning new skills just adds to your strength.
Those who end up in trouble tried to stay strong on their own for too long.
When you start to work on those ‘weaknesses’ or things that stress you out:
Money, quality time with hubby and the kids, your health & actually having fun.
You will change again, this time for the better.
A whole world will open up of relationships and tools that show you that a better life is possible regardless of your circumstances.
You Can’t Change Anyone Else
Chances are you can’t change your child’s diagnosis or the outcome.
The only thing you can change is you.
Working on your relationships, finances, and health skills won’t result in your child getting subpar attention or care from you.
The way you advocate and build relationships with your child’s team will improve.
Your attention details and capacity to manage the really hard stuff will grow.
Appreciating each moment, instead of always running around like your head has been cut off, will become more commonplace.
Self-care, me time, personal development, however that journey starts for you.
It makes you a better carer for your child.
Every Family is Different
Don’t let your early childhood intervention worker tell you that you should quit your job or sell your business.
Fire her and get someone who wants to support your family’s big picture.
When anyone is making a recommendation and it doesn’t fit with your family values, take your time.
Consider your options, ask for another opinion, find out what others have done.
Every year 2500 children are born with a rare condition. Around 6-8% of the population has a rare disease.
This means that doctors and health professionals know little to nothing about it.
If that is your child, that makes you the expert.
All that time you spend with them, listening, learning and loving them.
That will become your greatest asset.
Always tell the team when something isn’t right.
Go with your gut.
You can learn all kind of medical jargon and procedures you never imagined.
It will become second nature.
Every so often they will suggest therapy or procedure that they can train you to do to at home.
Sometimes your response will be ‘I can’t do that.’
You probably can, but what you need to look out for is the times your response is;
‘I can’t ….do another thing.’
Sometimes you will be at your limit.
You’d rather have the support of the professionals while having the inconvenience of organising them to do it.
It will feel easier than face being the person responsible for another thing.
It might be because you feel more like a doctor or nurse than a mum.
It might be because the rest of the family is already stretched thin.
It might be because you can’t do the ‘you’ things you love if you take it on.
It’s okay. Tell the team that.
Don’t be hard on yourself if you miss something.
You’re just learning.
Your experience with having a child with special needs is nothing like you’ve been through before.
The good you do will always outweigh the mistakes.
Expecting yourself to be perfect is a recipe for anxiety and depression.
& not forgiving yourself when you inevitably do make a mistake only makes those kinds of side effects much worse.
Are hugely painful for parents of a child with special needs.
If they are a symptom of your child’s condition, then no amount of discipline or beating yourself up is going to make them disappear.
A typical child’s parents have only the slightest insight into the difficulties of behavioural issues.
They struggle too.
So, I give you permission to ignore the advice of those who aren’t walking your path.
Get professional help, advocate, jump up and down until you get the support you need for your child and yourself.
When you get tired of being that person remember:
You are going to be okay.
It changes you, but you have the opportunity to choose how that looks.
Caring for yourself first makes you a better carer.
‘Developmental delay‘ and ‘failure to thrive’ are sometimes terms you learn right at the start.
Some children really will just grow out of it.
That’s why they have these terms.
However some won’t and as the parent, you may be the first person to notice these delays.
To notice the loss of ability or even to realise that these things are not going to just go away.
If you notice something, mention it.
If your current GP or Paed isn’t hearing your concerns, find a different one.
There is also a small small small percentage of the time that you could be wrong.
If you suspect this, keep fighting for your child, but also make sure you’re taking care of you, even get professional help so you can work through your issues.
Sometimes its a bit of both!
So covering your bases and taking care of yourself as a parent of a child with special needs is always a good idea.
These can be from trauma or genetic conditions, from developmental delay, or side effects of other conditions.
Such as blindness, or hearing problems.
Sometimes it just doesn’t matter how long they take to learn.
Sometimes you can get great therapy or tools that help them improve.
Sometimes a medical procedure can turn things completely around.
They are still your child.
They have lots of incredible things about them.
Learning issues might make them incredibly frustrated at times.
Being there and knowing that learning isn’t more important than health is something to keep top of mind.
Mental Health Issues
I’ve touched on a few for you.
But sometimes on top of everything else your child can develop mental health issues.
With some conditions, it is one of the symptoms or the major component.
Other mental health issues develop over the journey.
Procedural anxiety can become a huge issue. Do what you can to minimise the things that trigger it.
There are professionals who specialise in it.
Pain management, play therapists, Occupational therapists, Palliative care teams even.
The people you need on your side in these moments are the ones who focus on well-being, not medical status.
Children can sometimes develop symptoms of anxiety and depression because of what they miss out on, or how much time they spend in hospital.
Making an effort for things they enjoy in the hard times bring up the mood of the entire family.
Keep an eye and seek help early.
The Most Helpful Thing I Did
After the self-care things, the most important thing I did was;
Building solid relationships.
Building solid relationships with everyone in the teams, knowing who I would call if things got tricky.
Knowing who I had a good rapport with, and who would advocate on our behalf if the things I was trying didn’t work.
Find the network that provides support for the condition you are dealing with.
Make sure they have a peer support program and connect you with other parents.
The knowledge other parents have, those who have gone before you is invaluable.
They know which specialists are good, where to source equipment, even the questions to ask.
Look online if there is nothing local to you.
Especially if you find leaving the house and getting out difficult. Or you feel like you just don’t have time.
Thought you might not know it now.
There is a whole globe of parents out there in the same boat.