Autism

…but today I cry

Those who know me think, as a mom of a child with autism, I’m generally positive in my outlook. I would like to believe that is true. However, in me hides a realist–not to be confused with a pessimist. The realist me rears its head every now and then and I kick it back in, hoping it will stay there defeated and quiet. But some days it bounces back with so much strength that it clouds the sunshine in my eyes. Even on those days I listen to it’s whispers, quietly shed a tear, and go on with my life pretending it’s all going to be ok, and it might, but it leaves behind that doubt that lingers on — a doubt that forms a knot in my heart and makes it a little harder for me to breathe. It was one such day when my optimism had to bow down before my realist self.

My son presents himself as someone with cognitive challenges. For the last few years, we’ve been trying different approaches to teach him the basics of academics — letters, colors, shapes, and numbers, and he has not shown much progress. He might have it all in there in him, but he has not displayed that skill in the world around him. The realist me knew much earlier that we need to move on and try different skills — that we need to stop showing him those letter flash cards and switch to more functional skills, but the optimist in me would not listen. It insisted that we keep trying and that one day he will know his As from his Bs and his circles from his squares. We kept pushing, year after year until finally, during an assessment his therapist suggested what I knew in my heart but I never wanted to hear. She said that since they don’t see much happening, we should move on from basic academics and start focussing on functional skills- -things like typing his name, self help skills, safety, learning sight words, etc. I knew she meant well. I knew she was being practical and I nodded all the way because I knew we had to move on and that we cannot be stuck on one thing forever, but someone saying it out loud almost felt like a blow to my face. Nodding in agreement felt like I’m giving up on my son , that I’m undermining his abilities, and that I no longer believe in him. I felt guilty. Most days I’m all charged up and ready to change the world for him but today was not that day. Today made me realize how much I’ll have to let go and how often I would have to sit quietly across the room and have some professional tell me that we need to give up on something and how many times I would sit there in agreement because I know she is probably right, all this while hoping that my child will someday prove all of us wrong. That evening I cried. Really hard.  How some events can build up a storm of emotions that seem to uproot your confidence, your belief…events that seem so ordinary from the outside but have such an extraordinary effect on us!

I realized how often I might have to move on to something else, something more important, and give up on something which is essential but still somehow not important enough for my son.

Over the years I’ve learnt to change my expectations and realign my dreams, but ever so often I let my defence down and then my “It’s-all-going-to-be-ok” world gets knocked down by my reality. I hope one day my son will understand that I did not give up on him: I chose my battles so that I could ensure a better tomorrow for him. Some days I feel guilty and some days I feel empowered. It’s a roller coaster that we are on and we don’t know if we are ever getting off.

I know tomorrow will be another day and tomorrow my world will again be lit up with my optimism and that my son will give me hope with his brilliance that shines in his eyes and that day I’ll be better able to handle the realism that made me slump in despair. But today, I cry. I cry because I feel like I’m giving up on my son when I know I never can!

tulikaprasad

I'm mom to a beautiful son who is on the Autism Spectrum. I love to share stories and experiences about our journey and learn from other families along the way. Autism has changed our family and our perspective and my mission is to be part of that change that will make the world a more inclusive place for special kids like my son.

View Comments

  • Beautifully written, Tulika! Most importantly, may he ALWAYS feel and understand your love and dedication to making him the best he can be. Hugs and prayers for you, my friend!

  • Aww tulika..I feel your pain.I bet every mom who cares and loves her child more than anything in this world would understand your tough journey.. When I see my toddler, his innocent eyes full of love and trust on me, it kills me. That feeling that your little precious is struggling everyday to understand the world around him kills me every sec.. But as long as I'm alive, I'm going to be his voice, I'm going to be an armour to protect him. If not today, some day the eternity will definitely bless our children..
    Loads of love for you dear

  • Beautifully penned down.... You a wonderful mother with such strength and optimism.... All the best to achieve your goals and lots of love hugs and kisses to Ved.... Subhasree

  • Hugs
    It is hard !
    Hopefully expressing your heart helped you

    your love for him is so pure and unconditional

    I hope you both have happiness

    I don’t know much yet , am walking lost in this world of autism but I had a suggestion ( you might have known and tried this but thought will let u know
    http://www.halo-soma.org/main.php?sess_id=9108dffa157af303d73c66302446bbf3)

    I don’t know again the learning styles of your son but thought will let you know .

    And please free to keep in touch

    I had contacted you a year back when my journey began .

    • I remember speaking with you Disha! RPM is something I am looking to. Thanks for the suggestion! Hope you’re dealing the the challenges better now

      • Still making sense of the whole enormity of his challenges and to help him

        Only thing I need to make sure is to take care of my emotional vulnerability but that’s pushed back seat .

        your posts have helped me to set up sensory room , OT ideas , and myths .. also so much more

        Thank you very much

        Let me know if u try RPM

        Also the spark by Kristen Barnett was suggested to me by some one . Check it out if you feel like

        • All the best for all that you’re doing. Everyone figures out their median

          I will definitely look into spark.

  • You touched a chord with your passionate writing. Beautifully written, Tulika. Ved knows it better than anybody how much you and Ravish love him and fight for him. He feels your vibes, your heart beats. To him probably all this doesn’t matter but you have to keep giving from the endless reservoir of your love. And you owe that love and forgiveness for yourself too. Once you’ve let out the big cry, give yourself some space till you get your positivity back. I say this always, take care of yourself too. Don’t be too hard on yourself.

    Kudos for being brave to put it all out so eloquently . Keep writing, we love your work.

    Mitu

  • Tuli I just dont know how to comfort you. A tight hug from me . But I am sure Ved understands how much you and Ravishji love him & so far he understands nothing matters. If at all i can be of ANY help just tell me. Love u all!

  • I'm so with you on what you experienced as a mom. We all know giving up is not an option but when sometimes our guard is down, we feel like giving up.

Recent Posts

When my son’s tears brought me joy

There are tears of joy and tears of pain and then there are tears of…

1 year ago

Love Letter from My Son’s Teacher

Autism parenting is difficult, really really difficult. While some days bring hope, others are spent…

2 years ago

Parenting with Purpose: Establishing a Self-Care Plan for Parents of Children with Special Needs

This is a guest blog from Emily Graham. Emily Graham is the creator of Mighty…

2 years ago

Why I will talk to my son more

Speech is not just a tool for communication, it is often a measure of intelligence,…

2 years ago

Scoring against Autism

My son is autistic. The severity of his challenges puts him in the category of…

2 years ago

A message about my son that changed the way I think

Ever since my son was diagnosed with Autism, I have been fortunate enough to have…

2 years ago