Monday, 24 June 2019

The silent grief of a special needs parent

 I have said before and I will say it again I love my kids more than I could ever explain and there is nothing I wouldn’t do for them, but I won’t lie and say that as a special needs parent I have not gone through periods of grief along our journey or that I feel damn guilty every time I do.

As a parent… as a mother we spend 9 months (or less/more depending on your pregnancy) planning; we spend our pregnancy lovingly caressing our bellies, talking to our babies, we change our diets we approach the world more cautiously and I know that I spent so many moments during my sons pregnancies envisioning their futures and ours, maybe they would be an artist or a doctor, would they pursue college or take a year off to see the world would they have children of their own one day would they get married or stay single, I envisioned birthday parties and family holidays filled with laughter…. Of course I know that you cannot plan out your children’s lives for them but there is still a part of you that envisions certain pathways for your child that maybe you never had the opportunity to pursue, we envision a life for our children without hurt and pain, one that comes easy one that nourishes and supports them so that one day they will leave our home and go off into the world ready to take on anything.

When Loghan was diagnosed it was incredibly validating for me as a parent, it meant that everything was not all in my head and that my child wasn’t just difficult because he could be, it meant that I had something to research it meant avenues to pursue by way of medications and therapies etc it opened up a whole other world and although incredibly daunting in the beginning I felt like I had a way forward, and in all my nativity as a newly established special needs mom I thought that there would be less judgment and more support and understanding, I felt that I would surely meet new friends and people who were travelling along a similar path and who would/could understand, don’t get me wrong I have met some really incredible people and having access to certain resources and avenue has helped to an extent….. but my issues with the SA special needs support systems and resources aside nothing prepares you for the guilt and heartbreak- nothing prepares you for the tears and frustration… nothing prepares you for the shattered dreams and vision, nothing prepares you for the feelings of loneliness and the mom guilt that emanates through every fiber of your being every time your child comes home in tears, every time they cannot go somewhere or are excluded in some or other manner….

 Yes we will rewrite the paths and restructure the dreams, yes we will carry on and try to support our children so that one day they may still take the path we envisioned and be able to pursue the opportunities possibly even better than we hoped they would and with even more pride because they/ we overcame the difficulties. I won’t lie and say that Gabriel’s diagnosis some years later did not break my heart, it did not feel the same, I did not feel relieve as I had before, and it’s not that I love my children any less or would change them for anything, having a special needs child is amazing and wonderful and there so many wonderful things that I could never and would never change or replace, but after seeing the hardships, the pain and frustration through Loghan’s journey it just broke my heart to think that yet another one of my children would be travelling down this path and would be faced with the same hardships.

There are times when I sit and wonder whether my boys will ever be ok out in the world on their own, I sit there as the tears flow as the frustration and anger builds and the grief is overwhelming, special needs parenting can be so incredibly lonely and once I allow those feelings to flow I am racked with guilt because A I wouldn’t have my children any other way and B because I know that as difficult as it can be for us as a family and as parents it pales in comparison to how my children and feel and what they have to deal with on a daily basis, I just wish I could shield them and I wish there was a better understanding of this silent grief so that special needs parents did not feel ashamed or guilt ridden for feeling the loss of those intended plans and paths, because it is normal and it is real and sometimes we need someone to tap us on the shoulder and say it’s ok to feel this way I/we understand that it doesn’t mean you don’t love your child/ren or that you would have it any other way.

Autism is more often than not wonderful and amazing, children on the spectrum have so much love to give and so much to teach, my children have taught me more than I think I could ever possibly teach them, and I know that every special needs mom I have ever met has shared this sentiment, it doesn’t mean the journey is less turbulent or easy it doesn’t mean that every day will be filled with rainbows and unicorns but it does mean that whatever you are faced with is worth the ride in between.

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