Unless you are living it, I don’t think many people fully understand the actual demands of being a special needs parent. Not to forget the effect that living with special needs has on the whole family.
Sure, many would understand that any diagnosis leads to more medical appointments, the need for early intervention services, specialist advice, and a greater reliance on community support.
Many would also understand there would be added stress for the family, in looking after a family member with additional needs. That one is obvious too.
But there are other, more subtle, challenges that affect each and every special needs family, every single day.
And I believe all special needs parents need to acknowledge and accept these demands so they can move forward and live a more positive life.
Because it IS OK to admit that things are tough.
I’m talking about the normal, daily stress of raising a child with special needs amid raising a family at the same time. Raising a family is a challenge in itself – it’s not an easy thing to do. Raise the difficulty level by 100 and you may get some idea of what it’s like to be a special needs family.
I’m talking about the feeling of guilt that every special needs parent experiences. Guilt for why their child has a diagnosis. Guilt because they can’t make things right. Guilt because they spend more time with their special needs child than with their other children. Guilt because they can’t maintain their normal commitments anymore.
I’m talking about the complex emotions of siblings, struggling to understand what’s going on and why their brother/sister requires more attention and care.
I’m talking about how every change in routine, every outing, every appointment, and every movement has to be scrutinised and assessed in minute detail, to identify potential issues.
I’m talking about the need to plan your life with military precision in order to just get out of the house each day.
I’m talking about the inability to rest and relax because something could go wrong at any moment in time. And you need to be ready to act instantly if it does.
I’m talking about the need to be vigilant to make sure your child is safe and to ensure the rest of your family is safe at all times too.
I’m talking about finding that elusive balance between understanding, empathy and firmness when it comes to dealing with your child.
I’m talking about discovering the patience and strength required to keep everything together each and every day.
I’m talking about the need to educate and encourage acceptance everywhere you turn. The regular battles with schools, specialists, therapists and the bureaucracy in order to access the minimum supports required to help your child.
I’m talking about the inclination to hibernate and just stay at home because the thought of fighting more battles with your child, or on behalf of your child, just seems too hard.
I’m talking about the feelings of grief and despair that continuously ebb and flow but are never far away.
All this, and more, is often the daily reality of living as a special needs family.
And this is why it is OK for you to admit that things are hard.
Your experience as a special needs parent is real and valid. You should feel comfortable to express the difficulties of your situation. And you should feel free to seek help if you need it.
Acknowledging that it is tough to look after the needs of your child, your family and yourself is not a sign of weakness.
Accepting this fact doesn’t make you a terrible parent or means you are betraying your child.
It is accepting the reality of your situation. It is a necessary step in moving forward.
Of course, it’s best to share your thoughts with people you can trust first. And you should never say anything that could hurt or offend your child. Your truth is your truth but never blame your child for your situation.
It is what it is. No-one is to blame.
But don’t bottle up your feelings either, because the resentment will just build up inside until you won’t be able to contain it any longer.
I know how sharing some of my experiences has been a positive for me. It has helped me to process my thoughts, put my feelings into perspective and to prevent the inevitable explosion when it all gets too much.
I share my truths publicly but you don’t have to. Just talking things over with a friend or family member, keeping a journal or seeking professional advice is maybe all you need to do. It might be just what you need to come to terms with your situation and find the strength to keep going.
Because being a special needs parent is not easy. And that’s the truth.