Cerebral Palsy Parenting & Guilt
When I say guilt I certainly don’t mean anything sinister – just guilt in the sense that you often resent your lack of free time, or you sometimes may feel that you are not doing everything possible for your child.
It may be something simple like you think you look at your phone too much when you could be investing valuable bonding time with your child.
I have since learned that when your child is diagnosed with something like cerebral palsy that this guilt is magnified tenfold.
The variety of ways in which this guilt can manifest itself is quite astounding…for me I get this on loop (and I am sure that many others in this position are the same from what I have discussed with fellow SN parents).
Here are a few examples:
- “Am I doing enough therapies? Should we be doing more physio? Is she going in the standing frame enough?
- “Am I researching enough alternative therapies? Other mums seem to be trialling a lot of things I have barely even googled”
(On a similar note) “Am I trying to hard to look for other therapies? I don’t want people to think I’m trying to ‘fix’ her, I just want what’s best for her”
- “Am I doing enough ‘typical’ mum stuff like playing games and singing?
What if all these hospital visits and appointments and exercises etc are too much and I’m hindering her learning about the world around her?”
- “Oh my gosh I need a break. My back is killing, I’ve had no me time, I wish someone would take her for a few hours”
This then turns into horrified guilt for not wanting your child with you every waking moment!
(Having children is of course synonymous with always being exhausted and wanting a break!)
- “Do I let her watch too much TV?” – The TV is barely off in our house, and when we are out the ipad comes with us.
At the moment we hope it is a phase/behavioural or sensory issue and that eventually we’ll come to an understanding with it!
This is a constant guilt for me.
- Every appointment where I discuss Amy’s irritable and difficult behaviour I have this sinking sore feeling that I am being a bad advocate for her and hope that she understands I am just trying to improve the situation, not talk her down.
One of the first things to happen when you arrive in this strange world of cerebral palsy and special needs parenting is that specialists very much like to visit you at home… and if they are not at your home they are expecting you in clinic, writing to you, phoning you, and indeed appearing to you in your subconscious mind as you sleep.
The onslaught of appointments can sometimes be unrelenting but we persevere, we tell ourselves “this is essential for the development and well being of my child”.
At the same time there is a little voice in the back of my head saying “with each foot through that door you are allowing your child to have a life very different from that of ‘typical kids’
… why not just cancel this weeks’ appointments and go to the park?”
There are the dangerous guilts too where you think too far into the future and scare yourself.
There are the dangerous ones where you wonder if you had done something differently would things be the same. Stop these. If you do this – stop!
It is so unhelpful and damaging that I am learning now to acknowledge my worries but then put them back away where they belong.
So as you can probably ascertain – It is quite draining living in my head sometimes.
I know there will be plenty of others in this constant cycle of worry and guilt – I am told it is perfectly normal and at least shows that you are always thinking about what is best for your child.
If I were to give any advice to anyone in the same situation I would advise to make lots of lists – All of your worries, all of your concerns, everything you want to google and research, everything you want to ask in your appointments that week.
Just try to be as organised as you can and push these little niggling concerns to the back of your mind.
It’s okay to feel guilt – You have taken on a lot more than you originally expected to sign up for.
Yes it’s hard work, but it’s so rewarding. It’s okay sometimes to have a break from it all and go to the park in favour of physio.
Equally it’s also fine to leave your child with a grandparent whilst you catch up on chores or have some “you” time.
It’s so difficult to find the balance and ensure you are definitely doing the right thing, but trust me – you are.