Special needs parents: it’s okay to admit things are hard

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.

Special Needs Parents pinterest - www.myhometruths.com

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.

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39 Responses

  1. What an eloquent and heartfelt post. I will share this with my bestie who has an autistic son. I always refer her to your space on the web. I think constantly educating others must be an enormous drain on you all. X

  2. I’ve had so much guilt and worry just with bub’s eyesight and speech issues, I can’t imagine how stressful it must be as a parent of a child with autism or any other special needs {#teamIBOT}
    Toni @ Finding Myself Young recently posted..Breaking all the blogging rules

    • Kirsty says:

      No matter the situation, any added stress or worry for your child can be stressful. You know I’m here if you ever need to talk x

    • Deb says:

      My son has Autism and Down Syndrome. I can still see how your situation is stressful. 🙂 But even if your child DID have other issues, you’d fight your way though it. 🙂

  3. Hugzilla says:

    Thank you for always keeping it real Kirsty. It makes you no less loving or courageous to admit that things can be tough x

    • Kirsty says:

      All I want to do is speak the truth of special needs parenting and help other parents if I can. Thanks for reading and for appreciating the honesty x

  4. Well said Kirsty. Pretending it is easy only insults the rest of your family who live he challenges everyday. Keep sharing the love girlfriend
    Natalie @ our parallel connection recently posted..You can do this

  5. I know how hard it is to parent children that don’t have any additional needs. I take my hat off to you Kirsty. You do an amazing job. xx

  6. Tegan says:

    Great post. I think the saying ‘it takes a village to raise a child’ would be more important when you have a child with special needs. It’s important to take care of yourself as a person outside of being a special needs parent too, because as I’m sure you know, it’s harder to face obstacles when you are emotionally drained.
    Tegan recently posted..How the RFDS saved my life

    • Kirsty says:

      Exactly – I’ve been there and it’s a terrible place to be. It’s part of the reason I wrote this as there is no point in adding extra stress over feeling bad on top of the existing stress that comes as part and parcel of being a special needs parent. We have to learn to let at least some of the guilt go (even though I’m still working on that myself 😉 )

  7. Betty says:

    Kirsty, you are incredible! Accepting the situation must be very tricky. You must be a very strong woman to write so candidly about it.

    • Kirsty says:

      Thanks Betty. I am strong but I’ve also been in a terrible mental place and continue to struggle with depression and anxiety. I just want to help others, particularly those new to special needs parenting, to let some of the guilt go so they can focus on helping their child (and the rest of their family too).

  8. Jeramy Hope says:

    this is a fantastic piece, thanks for sharing. this is the one thing i struggle with the most. sharing the complexities and difficulties of everyday life. again thank you

    • Kirsty says:

      Thanks Jeramy. It really is hard for those not living it to understand the unrelenting stress of being a special needs parent. I wanted to raise awareness in others but I’m also hoping that this might help other special needs parents, especially new ones, to be okay about this truth. None of us need to carry any more guilt or worry – we already have enough of that!

  9. Lisa says:

    This is such a great post! I shared it on my Facebook page for everyone I know to read… Especially those parents of children with Special Needs. Thanks for sharing.

    • Kirsty says:

      Thanks so very much Lisa – I just want this to get to those who need it most. Thanks for helping to spread it a little further x

  10. suzanne says:

    just wanted to say thanks for this. I may print it out and put it on the wall for visitors to see! we have poorly twins and are 2 and a half years in to our journey and no on e understands or helps and its hard to admit how tough it is

    • Kirsty says:

      Suzanne I really feel for you. It’s so hard when you aren’t getting the understanding and support that you need. I hope the post can help others gain a little more understanding of your situation. And I hope it does help you to admit that it is tough – and that really is ok to admit x

  11. Grace says:

    Kirsty, I love how inspiring and encouraging this post is. Thank you for reminding us that there are so many complexities to consider when it comes to parenting, especially for special needs. It is a journey with lots of twists and turns and I have so much respect for special needs parents.

    • Kirsty says:

      As do I Grace! My goal is to help other parents better cope with being a special needs family. The first step is being okay with the basic truth that it’s not an easy road. I’m hoping encouragement and positivity will be easier to find once we all come to accept that basic truth x

  12. Emma F says:

    Thanks for this post that helped me breathe again on yet another difficult day. I have three children with special needs (Asperger’s, ADHD, Dyspraxia, Dyslexia, Hypermobility and the usual raft of associated problems), and as a result of the many years of stress and lack of sleep now find myself very poorly and disabled. Only now that I am no longer quietly fighting all the battles behind the scenes, does anyone realise just how many balls I was juggling every day (even my DH – he didn’t have a clue). Help is finally trickling in, but it is the battles that are wearing me down, just getting anyone to listen rather than presume is almost impossible. Just knowing that all this is normal to other people is a huge help. That, and also wine a chocolate!

    • Kirsty says:

      Oh Emma – I’m sorry all those years of stress have taken such a toll but it’s good to know that help is starting to come your way (somewhat belatedly). BTW chocolate and wine have always been my go-to as well – very necessary on those harder than normal days x

  13. JD McLean says:

    A lot of this also applies to those who have/take care of severely disabled family members. For me it is my father. I am 24 and he is 53. I have never been so emotionally and phisically drained until this last year and a half. We have alwayse been one of this check to check families. But being the main person from your family with the responsabilty of a quadrapalegic father 30 years older than you. Not to mention that he is your best friend and idol. It get hard and even harder to admit… Thank you for this.

    • Kirsty says:

      Oh JD, that would have to be so hard. It’s hard physically, mentally and emotionally to be a carer, particularly a sole carer. And I know it’s hard for the caring roles to be reversed too – I watched my own father slip away to cancer last year and it was difficult to be his carer as well as his daughter. Hugs to you x

  14. revcep says:

    can so relate! Its the relentlessness of all those tough things… you put it so well, thanks. #spectrumsunday

  15. Tina Medlock says:

    Love your posts Kirsty. I used to be absolutely rubbish at admitting things are hard but I am wonderful at it now! 😀

  16. Dominic Mariani says:

    Kirsty, you have scratched the surface. So many suffer in silence and perhaps guilt. I truly hope your words will allow others to see themselves not as being weak for admitting they cannot do it alone but empower them to be able to ask for help. ONLY the family blessed with a special needs child/children can truly express the amount of energy required to care for that person we on the outside can only imagine and then we should multiple that by 10. Be there to help your family/friends with special needs . When they reach out for help don’t say how, say when, don’t say later, go now. Not much in our normal life could be as important that we cannot make time to help!!

    • Kirsty says:

      Thanks so much for your encouraging and thoughtful comment Dominic. it’s true, no-one can really understand the unrelenting stress of special needs parenting unless you have lived it. I do hope this can help raise awareness and increase understanding x

  17. Thanks for your courage to bring this up, so many moms don’t know who they can reach out to when they’re feeling beat up. For some the events we experience it would be considered abuse and yet we suck it up and keep going. Unfortunately it often spills out into anger towards others. Having a close friend who will listen without judgement is a blessing. The special life is very complicated and complex.

  18. Jo Tracey says:

    I remember reading this one when you first published it. It’s brave, honest and beautifully written. Wishing you & your family a fabulous 2017.

  19. Such good advice. I spent years being a carer to my husband through a series of illnesses and conditions that cost him his career at age 30 and chance to be the active husband and father he wanted to be. It was BLOODY hard and whilst he is well (for him) and completely independent now thanks to quite a few reasons, I will NEVER forget the pressure, the loneliness and the lack of understanding by some. However, all that is past from my life now and I am fortunate to have ‘survived’ but for many, it is never-ending and to all those I offer my sincere care and love. Thanks for linking up for #lifethisweek 1/52 Denyse xx

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