August 22, 2017

I am a Special Needs Mum and it’s not a glamorous label.

It’s certainly not a title anyone would aspire to, like CEO or Director. A Special Needs Mum is someone unique, with a highly specialised skill set, and is very…well…special.

We do not get to choose this new title: it’s thrust upon us when our child is first diagnosed (either in-utero or later in life). And one never stops being a Special Needs Mum. There is no downtime. No holiday. No long service leave. It is the epitome of a full-time job.

Special Needs Mums will acknowledge publicly that their lives are a ‘bit’ harder than ‘normal’ mums. However, there are also many secrets we keep from family and friends, and even our partners. Some secrets are so scary, that to voice them would be to admit that our situation is often overwhelming and sometimes terrifying.

Let me share 3 of the deepest secrets Special Needs Mums keep to themselves, and things anyone who knows a Special Needs Mum can do to connect with them on a deeper level.





You won’t easily offend us.

What we yearn for is the inclusion for our child, our family and ourselves. You won’t offend us if you wish to know more. If you don’t know how to ask, that is ok. It’s normal. But ask us; we love to share our story with those who genuinely care. By sharing we feel less isolated.

We love it even more when you work with us to find ways to include our children and even our family. One thing we do have is perspective, so that conversation you think will be awkward or invasive, likely won’t worry us at all.

That perspective means that despite the efforts of family and friends to shield us from bad or upsetting news, we are actually extraordinarily resilient. Special Needs Mums are Super-mums; very little can penetrate that positive attitude we radiate into the world.

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We have heard the majority of the thoughtless and rude remarks regarding our children or ourselves and most of the time we accept we cannot change societal attitudes regarding disabilities. We only hope for and advocate for inclusion, and through that fight we grow a really thick skin very quickly.

We are very lonely.

We would love to have more time with family and friends, especially when we think back to the days of hosting dinner parties with friends and visiting family (semi-)regularly. For me, now, it’s an odd Facebook message to check-in with old friends.

It’s lonely at times; pathetically lonely. That’s all too clear when my excitement is overwhelming at the prospect at seeing an old friend in person. Giddy like a schoolgirl!

Special Needs Mums don’t choose the loneliness; it is pushed upon us. In between the therapy and doctor appointments, plus the needs of our child, it’s hard to nurture and maintain relationships.

It takes a lot of effort and understanding to be in a relationship with us. We don’t want to make it harder to catch up with friends, but ultimately have limited options to improve the situation.

Leaving home and going out is hard. It’s logistics and contingency plans. All those ‘what if’s’ get tiring. We can be limited by the needs of our child or by the place we would be visiting. If the place we are travelling to does not meet the needs of our child, then we cannot relax and enjoy time away from home, so eventually we may not even bother trying.

I miss those days of late night dinners, belly-aching laughter with friends and family, and spontaneous catch-ups at the café, but it isn’t coming back any time soon. And that hurts.

We worry a lot about dying.

For some Special Needs Mums, their child is diagnosed to not live a long life. This is stressful enough, but Special Needs Mums also worry a lot about their child outliving them. Who will care for my child, if I or my partner are not here? Is it fair for their siblings to step up and take on the carer role?

It is scary contemplating a future where your child may not have your expertise, love and knowledge to advocate for them to have the best life possible.

A Special Needs Mum’s knowledge is wide and encompassing; we know how to soothe our child in times of distress or bringing together all of the doctors and specialists for the greatest care plan for our child. Who will do this, if we are not here?

It is this concern that has no answer, and unfortunately, no one can replace mum, or the knowledge mums possess.

We don’t let this hold us back, though. We know life is precious and short, so we take advantage of every opportunity to experience joy with our child and family.

My girl does have a shorter lifespan, and we don’t know when our lives will change. Her condition is extremely complex and I am the source of all knowledge and advocacy to ensure she lives a rich and enjoyable life. I don’t let these worries hold me back, they push me forward to surround myself with like-minded friends and families who want the same goals of joy and adventure for my girl.

It comes back to perspective: I don’t sweat the small stuff.

Special Needs Mums are a special sort. We don’t choose this life, and it’s hard. Actually, it’s hard most of the time. But the journey from the start, though there may be no end, is filled with moments of extreme joy, purpose and self-discovery.

Take my three secrets and I encourage you to chat to a Special Needs Mum about her deepest fears and concerns, over a coffee, at the place that suits her, and begin to connect again with that Special Mum, and her Special Child.

Do you know, or are you, a special needs mum? Share with us below.


  • I know so many special needs mums and families and every family has their own story. I support and listen to these mums.

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  • Thank you for sharing this honest and real article.

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  • Thank you for making me aware of what special needs Mothers’ go through. I always knew how special you were but this article has made me more aware of just how special you all are.

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  • Great article – thank you for posting. Sometimes we just don’t think about the effects on SN mums with all they have to do. It can be very hectic at times, so I hope other readers will get a perspective about it and help when they can.

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  • Thanks for posting this, it was informative.

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  • I have child with special needs, and when he got sick, I lost friends I thought I could count on, but had friends that I didn’t think would care, step up to the plate and be fantastic. I think people avoiding you or thinking that they can’t talk to you about your own problems because they are think you are worse of, is the hardest thing. Having a chronically ill child saved my marriage because all of sudden little things were put into perspective. It can actually make you happier and satisfied in other parts of you life


    • It’s in moment of difficulties that we find out who our real friends are. :-)



      • Absolutely – friends should be there at all times and not just the good times.

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  • All my love to special needs moms ..you do an awesome job. ALL THE VERY BEST TO YOU AND YOUR FAMILY.

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  • I am a Special Needs Mum but not to the degree of some other parents. I do worry about my son a lot, and have done since he was born. I do at times feel alone, and isolated, and misunderstood, but it is the hand we have been dealt. We do have to invest more time and effort in raising a child to be as independent as he can be and to point him in the direction of what will best suit him. I also see my son at 16, as someone who I hope will be okay, and be able to leave home one day and live a fully functioning life. My son has Aspergers – or high functioning autism. So he can talk and do things other kids his age can do — except his harder, he needs more help, he needs acceptance and understanding.

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  • Yes I’m a special needs mum, but in my case it’s by choice as we adopted our special girl in our family.
    There’s a lot of truth in what you say, but we are and feel all different.
    One sentence in your article struck me and I don’t think I agree with it. One can never say about another that our lives are a ‘bit’ harder than ‘normal’ mums. We don’t know what’s in the heart or life of another, there can be abuse, trauma, conflict, terminal illnesses, sickness, pain, depression, addiction, psychosis and the list goes on.

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  • As a SN mum myself much of this is true. We love our kids and people trying to understand them and include them are always welcomed.

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  • Great article!

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  • Very challenging role for a mum or a dad. They certainly deserve our support.

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  • It is not always visible that a child is a special needs child. e.g. epilepsy, autism and the list goes on. There are thousands, possibly millions of Special Needs Mums that we have no knowledge of. Some are embarrassed to ask for help which is understandable sometimes. I felt sorry for one Special Needs Mum in a supermarket one day. I could see she was struggling at the checkout. Her baby was distressed so she was trying to pacify her and load groceries onto the checkout at the same time. I helped her and was told by passers-by to mind my own…..business and stay out of it. I was really annoyed but didn’t reply because I knew the Mum had overheard what was said and got really distressed. My priority was to the Mum and her baby. She had her car keys in her hand when she was leaving so I asked her to wait until I could talk to her…so I could calm her down before she got in her car and drove. I spoke to the girl on the checkout and she got somebody to pack my groceries as she was scanning them instead of her packing them. I caught up with the lady and talked to her. She eventually told me she was embarrassed for me. I explained to her not to worry about it, but that person had better not bail me up in the shop at a later date or I might not be so polite. I asked if she was OK to drive home safely and she replied “yes, thank you”. I’m glad she was because I have Epilepsy and am unable to drive. Fortunately I have never had a seizure in a shopping centre. Some don’t think about that if they see somebody having one. They just think they’re a drug addict or excessive drunk.

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  • I am not a special need mom. I think it must be very hard. I also expect that such a situation makes you stronger. You will find qualities in yourself, you didn’t know to have before. And yes, I would worry a lot about the future, in particular dying before the child. A lot of arrangements probably need to be taken for that eventuality.

    Reply

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