Is your identity wrapped up in being a mother to a child with a disability?

Have you lost who you are?

If you are not sure, then maybe ask yourself a few questions:
When was your last conversation that did not include your children?
When was your last conversation that did not include disability?
When was the last time you went out without your children, or had a night away?
When was the last time you did something fun just for you?
When you introduce yourself, do you say your a Mom, or a Mom with a child with a disability?
Do you still have hobbies, interests, passions that does not involve your children or disability?
If you are on social media, when was the last post only about you, that does not include your children?
When you wake up in the morning are you ever excited about something unrelated to your children?
Before you go to sleep, what do you think about, worry about, get excited about? Is it ever about something that is just for you?

SCARY, isn’t it. What we wanted to be and what we have become.

Most Moms, say I love being a Mom, it is what I always dreamed of.  Well, no-one dreams of being a special needs Mom. No-one dreams of the therapies, the appointments, the behaviours, the tiredness, the relentlessness, the stress, the isolation, the loss of dreams, time and life. No-one dreams of the all consuming world of disability. Yet, we love our kids and we have no choice. We enter it, we embrace it, we take it on, we fight, we struggle, we cry, we celebrate the achievements, we push through and in all of that we lose ourselves.

We spend our lives advocating for society to see the child and not their disability. To accept them for who they are as a person. Yet, as the saying goes “behind every great man is a great woman”, well behind every child with a disability is a great parent. In order for our children to become great, to reach their full potential, to be accepted, included, access all they need, and to be loved we give everything. We have nothing left and we lose ourselves. We become a “special needs Mom.”

I know, I became one. I am one. I lost myself, forgot who I was and whilst I did everything for my children, I as a person, as a woman slowly died. I wanted the world, my friends, my family, my lover to see me as a woman, however, I didn’t know who that woman was anymore. The Mom existed, the woman was lost. I don’t even think I saw myself as a woman anymore.  My whole identity had become being a Mom, being a Special Needs Mom. After having 100% care for 13 years of 3 kids, 2 with special needs and 2 with medical conditions, of course that was who I was, who I am. Yet I am more than that and so are you. You deserve: your own life, your own passions, your own time, your own personality and your own identity. You deserve to be the woman you want to be. You deserve to have a life too, your life.

If you are ok, your children will be ok. If you are happy, your children will be happy. If you can find a world outside disability, your children will enter that world too. Take a moment, to remember who you wanted to be. Try to have just five minutes each day for you. You are worth it, your children are worth it. Whoever you are, whatever your situation, however high your children’s needs are. They deserve more than a special needs mom, they deserve the beautiful, wonderful person that is YOU.  Find the woman, find your happiness, find You!

About Soph

2 Responses to “Be You – Not a Special Needs Mom”

  1. Michelle Lingle

    I have been parenting special needs children (4 of them, all mental health issues) for 14 years. We adopted a sibling set and what a game changer. I learned early on that even when I was not with them, I was constantly on edge waiting for the next issue, or explosion. I have developed PTSD based on the chaos that has reigned in our home during this time. It was a slow steady progression downward. While all the time I thought I was maintaining a good balance of mom and being true to myself. Alas, that was not the case. Several months ago, I began purposing to do things that are just for me. Finding my spiritual focus again, retaking my health and fitness into my hands, working to develop relationships with women outside of my circle of influence (which is hard when typically birds of a feather flock together) and setting boundaries with the children that have gone off the reservation. Is it easy. No. It takes monumental effort to head into the gym, and leave my cell in the car, knowing potentially that for an hour the world could tilt on it axis, but I do it. So far, I have been able to fix or redirect all things that have happened in that hour after my workout and with a better attitude! I see a therapist to deal with my PTSD, and am purposing to spend more time with the children that desire to have a mom for the sake of having a mom, not for purposes of manipulation. My husband and I are finally not prisoners in our home any longer and are taking steps to sneak away and spend some time together to work what the next stage of our 30 year old relationship looks like. Slow and steady wins the race moms!

    • Soph

      Hi Michelle, Thank you so much for sharing your situation. Wow, four children with all individual needs, no wonder you were exhausted and burnt out. It is so incredibly hard to maintain any kind of balance when so many individuals are requiring your time and attention! However, as you and I have both discovered, if you don’t take time for yourself, to care for you, to make yourself happy, to value your needs, it does actually fall apart.
      I know how hard it is to prioritise ourselves over the others in our lives, even just for an hour, we feel guilty, selfish, anxious of what might happen. We shouldn’t feel any of those things, you should be proud of all you are doing for you, it isn’t selfish, it is essential. It is so, so encouraging to hear you are on the way to healing, with support, strategies and dedication. Just keep it up. You are worth it and as you say, it means you can finally look at what the future might hold, for your own life, with your own dreams and goals and the hopes for your relationship. Keep it up. Stay strong and let our community know how you are going.


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