In my blog about feeling guilty as a parent, (back in July), I discussed that all parents will feel guilty, worried and fearful to some extent. It is normal to have some of these feelings and it is to be expected. This sense of guilt (worry and fear) is actually a sign of our strong attachment and commitment to what is best for our child.

At the time I promised to write about the additional worries, fears and guilt we feel as a parent of disabled children. So this blog I hope opens up some of those feelings and aids you in helping yourself.

Guilt As A Special Needs Parent.

With a disabled child, no matter what their disability, you, as a parent, are going to find yourself feeling the extra burdens of guilt, fear and worry throughout your – and their – life. You will have up and down days and weeks where these feelings will be more pronounced as your child experiences new growths, experiences and, yes, setbacks. This rollercoaster of emotions is perfectly normal.

But if you allow it, it can get out of hand thus adding to the already stressful situation you find yourself in. Burnout, although we as parents of disabled children don’t want to believe it, this is not uncommon. We will feel guilty for taking time off and looking after our own needs. But in the end I feel that it is extra important that you do so. Because at the end of the day we are the ones who have to look after our disabled children’s needs, fight the battles on their behalf, and fight for every right and entitlement. For who else will?

Being a parent is hard. But we take on that role with love. But being a parent of a disabled child can at times feel impossible. But enough of my ramblings let’s get back to the question at hand. What additional feelings of guilt are common among parents of disabled children and how can you help yourself?

COMMONLY SHARED FEELINGS OF GUILT HELD BY PARENTS OF DISABLED CHILDREN AND HOW TO HELP YOURSELF.

1 We can feel guilty that we aren’t doing enough.

Yes, we always feel we could be doing more. Whether that is research into our child’s condition, new therapies, special diets, doctors’ appointments, etc. The list is actually endless here. Basically, we see it as our role to do more of everything but there is never enough time.

So, first off let me tell you, you are doing enough! Any parent of a disabled child does. This can be far and above anyone else I know when it comes to their child. I’m not putting other parents down here. Parents who feel guilty here are usually the ones doing everything in their power for their child.

So let yourself off the hook please and stop this type of guilt in its tracks. Instead write down everything, and I mean everything, you do for your child. You’ll see that you are doing everything possible and then some. Keep this list where you can see it and let it remind you of what you do when this type of guilt surfaces.

This type of guilt buys into our sense of not good enough. So try and also use affirmations that remind you that you are enough.

2 We can feel guilty about doing too much.

Yes, you will feel guilty. Probably at times of exhaustion this will rise up more. Especially about everything you have written in the list above. It’s a very extensive list, you have so many different appointments, extra tuition, etc. It can all become too much. Should we take a break and let our child just be a child?

It’s okay to feel this guilt too. It’s normal. As you will probably push yourself and your child too much at the start. It’s all about finding balance. Take that list you created above, and look to see what you could take a break from.

Maybe start with school holidays and not have any appointments scheduled over those holidays? Can you reduce or balance out all the different appointments. If you speak with the different professionals involved and explain the situation they will help you find a balance.

Sometimes different departments in hospitals and different professionals you’re dealing with don’t communicate effectively. Leaving you running around like a headless chicken. Get them communicating better by showing them how many appointments and therapies your child has to attend each week or month. Get them on board in creating a better balance. It won’t do your child any good if they are exhausted from all the appointments, etc., either.

Maybe start small. If you are going to a therapy twice a week, then only go once a week or ask to go every other week. Find what balance works for you and your child.

3 The big one: We can feel guilty for causing our child’s disability.

As I said in the other blog on feeling guilty as a parent we always feel guilty when it comes to our children. But when it comes to being a parent of a disabled child we are constantly considering did we do something that caused this to happen. Was it our fault?

We always wonder “what if”, was it something during the pregnancy or delivery? We may never know how this happened. If we get caught up in this type of guilt we can become our own worst enemy. We get so caught up in this because we feel that if we find a cause then we can find the elusive solution and fix our child.

We have to reach a stage of acceptance. We need to realise that this is not our fault and that we can’t fix our child. I call this one the big one as it really does take time to reach that level of acceptance. We do need help in doing so. I suggest therapy as it is really the only way forward here. I offer counselling for women you can make an appointment here. 

4 We can feel guilty because siblings don’t get as much attention.

Even having all my children with disabilities I still felt guilty if one got more attention over the others. It’s so easy to feel this. Especially if you have to spend time in hospital, therapies or at extra tuition for one child more than the other children.  Having a child with a disability does leave you pulled in all directions at times and feeling exhausted with little time left for your other child (ren).

Let’s keep this simple, stop feeling guilty. Remember you are doing the best you can with what you are facing and with the time you have each day. You are a great parent doing the best you can in a tough situation. Again I suggest you bring this back to balancing your time.

It’s okay to ask someone to look after your disabled child so you can spend time with their sibling. You’d be surprised at how understanding these siblings are. They enjoy the time you give them and it is your time they need not extravagant gifts or gestures. If you feel nervous about leaving the house while your other child is being looked after plan some time reading a book, playing a game or watching a movie at home. But it will do you good as well to take some time out from the home too.

5 We can feel guilty for the decisions we’ve made or have to make in the future.

Let me tell you this is extremely hard as a parent. I’ve had to have a conversation about funeral arrangements with one of my children, yes her condition is that serious, and does it hold her back in life? No! But it was a particularly hard conversation for me to have with her.

Down the years I’ve had the conversations about test results and procedures. I had to make those decisions when they were younger. But as they grew older I had to explain why I made those calls at the time. I’ve always tried to emphasise the positive when it came to test results. Emphasise what they could be do, not what they can’t do.

You will feel guilty for every little decision you make along the way. Should you try some other treatment? Should you skip that procedure and try another instead? Should you wait and see how they progress? You can tie yourself up in knots over the “shoulds” and “what ifs” forever.

You are doing and making the best decisions you can as a parent. So give yourself a break. Research what you can. Ask for a second opinion if you need it. Then make the decision knowing you, as always, are acting with your child’s best interests at heart and from a place a great love. Think back over previous decisions and remember how much it benefited them. Focus on what you can do here and now and not on the “what if’s”.

6 We can feel guilty for the way we’ve treated our spouse or partner.

It is extremely hard becoming a parenting. Your whole sense of identity changes and you have to adjust to being responsible for another person. Your relationship has to make adjustments also.

We can feel very guilty when we neglect our relationship and our partner. We can feel guilty about the financial strain caused by having a disabled child. We can feel guilty about the arguments that the stress and lack of sleep causes. If you have any problems with the relationship already having a disabled child will bring them to the fore.

Get help. You both need therapy to adjust to what has happened. Your partner will feel as equally guilty as you do and your relationship needs the time to recover also. Counselling is a must here. It will aid you in better communication with one another at the very least. But it will also help you treat each other with respect and help you work as a team better on behalf of your family.

I’m not saying that there won’t be ups and downs throughout the years. With any relationship there will always be that. But it will help you weather the stress and strains better with love and respect for each other.

7 We can feel guilty for being a bad friend or family member.

We have so much to do that friends/family can be cut out of our lives at times or that’s how we believe it to be. It’s not that we don’t want to meet up or call them. We just don’t seem to have enough time in the day for everything we do. Never mind other people. Really they understand and are probably more than willing to lend a hand.

We need to explain to our family and friends what’s going on. They will understand and have probably already guessed. They know you love them and should be willing to support you. If they don’t, then leave them behind and move on to those family and friends that do support you.

There is no room for negative vampires in your life right now. You know the one’s who are more than happy to talk all about themselves. Never offer any real support and only leave you feeling guilty as a parent. Let them go now. You don’t have time to waste easing them out of your life, a quick, sharp let go here!

Keeping in touch can be made simpler by using social media. You can also make new friends through online support groups for parents of disabled children as well. It can be such a relief to know you are not alone. These are the very people who have all the knowledge and insights into the rights and entitlements’ your child can receive.

Bear in mind protocols for online safety. Don’t stick around anyone caught up in their own guilt or anger. You’ll learn to recognise these people quickly enough.

8 We can feel guilty about taking a break or putting self-care first.

You will stress about this and probably more so if your doctor, family or friend has suggested you take a break. You’ll look at people and think they are mad when they suggest you look after yourself. Because you simply don’t know what that is.

It will be hard at first to take those breaks, look for respite and make your self-care a priority. You are not being selfish here. You simply can’t look after anyone else if you don’t look after yourself.

I don’t think I need to offer a solution here other than to start with some simply self-care, ask for help and taking some breaks. You need to prioritise some self-care otherwise will start to play the victim or martyr here. You will begin to resent yourself, your children, your partner, your family, your friends. In fact, you’ll soon resent everyone. You’ll only end up exhausted, possible in a hospital and lacking the focus and clarity you need to live your life.

9 We can feel guilty about needing help to care for our child.

Simply you need help and you may always need help. It does your child no good when you try to be all things to everyone in the family. Again, this feeds into our “not good enough” we need to let this go and move on. Asking for help isn’t a reflection of bad parenting and your child will not be taken from you.

People know this. They know you are not abandoning your role as parent or caregiver and are, as I’ve said before, happy to lend a hand. Please recognize that you can’t do it all and that it is okay to ask for help. Being able to ask for help acknowledges that we are great parents that acknowledge we can’t do it all. In doing our best for our child we are willing to ask for and accept help.

Make a list of all the people who have offered to help. Reach out to people who are involved in online forums, (usually on the website attached to a particular disability or try #ablehour on Twitter Thursday nights 8 pm GMT), and ask them what you are entitled to in regards to respite, etc.

Make sure to use this list of people. If someone can babysit for an hour or two even once a week or month, allow them to do so. You can put together and operate a rotate of people so no one feels like they are the only ones helping out. It will make no end of difference to the quality of life you and your family have.

This list of common feelings of guilt is not inclusive. I’m sure you can add you own ones in here too. But please remember you are not the only one to feel that way. Reach out and ask for support if the guilt is making like unbearable. It is just not worth it and you energy is already stretched as it is. 

Work With Me

Remember you are allowed to ask for support. No one is an island. In fact I would strongly advise you to reach out for counseling if you, or a loved one, need to.

If you need extra support then you can also work with me. We all struggle with stress and overwhelm from time to time. If you find this has become a problem for you and you’d like some support then schedule an appointment with me.