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.
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.