Sometimes when I look back to before I knew Conor had Special Needs I get a lump in my throat, my heart tightens a little and that almost hollow aching pain in my chest starts. I know it is heartbreak and a sort of “longing” that I feel, I don’t know how to explain it completely into words, but if you have ever felt lost or longing, wishful for a moment in your past to be your present again you will know that feeling all too well.
I wouldn’t say it was grief but an almost smothering cloud of sadness, that envelops you so completely you lose your breath just then as you look back at your innocent self, just before you knew. I remember Conor slowly losing his ability to speak, I remember the panic when I realized that he no longer called for me, no longer said dada, now never said mama. I remember having him on my lap trying to get him to look at me as I would all but chant “mama” “mama”, almost holding my breath waiting, just waiting for him to say my name again.
I remember standing at the side of the living room calling out his name hoping he would turn around this time and hear me, but he didn’t, he couldn’t. At that time Hailey was going to a lovely country creche near where we lived and when I would pick her up my heart would break a little as I would see little boys Conor’s age leap in to their mammy’s arms, embracing them, hugging them, kissing them, loving them, calling their mammy’s names. I remember scooping Hailey up and rushing out the door as my eyes burned with the tears that were forcing their ways out.
I wanted what they had, I wanted my Conor back, I wanted his voice back. I wanted him to want me, to embrace me, hug me, love me, call me mammy again but he couldn’t. I drove home that day and Hailey in her innocence said “mammy why are your eyes always itchy”, she had seem me all too often quickly wiping tears away from my eyes when she would ramble over for a chat when we were together. I told her I needed to wear my glasses and in her little genius way said ” but you wear the circles in your eyes” (contact lens.) I had to laugh then because there was no fooling Hailey, she has a way of cheering you up without even trying.x
It seems so strange to me now, how hurt and lost I was back then.x I still have days like that where I just wish things could be different but back then I couldn’t see further that Conor’s diagnosis. My focus blurred for a while and I lost myself in the sadness that consumed me.
Now almost 5 years later, I see things so differently. I see change in Conor, I see progress, I see possibility, I have hope. His words have not come back and that still hurts my heart so much even to write that down but he has made huge progress especially recently! When he started in Knockrooskey National School that was the first major decision I had made for him about his life, he has thrived and progressed every day since.
Then recently a very dear friend of mine who has a beautiful little girl with Autism told me about this amazing Speech Therapist that was helping her little girl learn to talk. So I knew I had to try for Conor to help him once and for all get his voice back.
Every day since that first day attending The Speech Centre in Castlebar with his brilliant Speech Therapist Roisin, he is trying so very hard to communicate. He is learning so much as are we. Together with Roisin we are helping Conor to learn Lámh Sign Language, he is learning about Language by working with “Colorful Semantics”, he is using his “PECS” communication book to communicate and through Roisin’s guided instruction he is trying to make sounds!!
So much progress in such a short space of time. I always mention Conor’s ASD Unit in Knockrooskey as well because they go above and beyond to help him thrive. When they heard Conor was learning Lámh sign language Noelle; Conor’s amazing teacher and his brilliant SNA Jenny together are learning Lámh now aswell and will attend an upcoming training course on Lámh so they can help Conor and other children at the school to communicate. They are helping him practice everyday to try and makes sounds with his voice and encourage him to use his sign language and his PECS Communication too.
I know we are and he is so lucky. There are so many children who attend differing types of schools where for whatever the reason their SNA’s or Teachers are not able or are unwilling to learn differing ways to communicate with the children with alternative communication needs. I have spoken to so many Parents who struggle every single day to help their children to communicate, to have their children’s schools come on board and work with them in helping their child to communicate and that is when I am so aware how lucky Conor is.
For anyone who has a child who is non-verbal, or struggles to communicate with the language ability they do have, my advice is do not lose hope! I cried my eyes out for years for Conor, for Hailey and for ourselves, wishing and hoping for his voice to come back , for him to say Mama again.
The other day my dreams really did come true. I always thought if he ever would say “mama” again he would physically say those words and oh how happy I would be. When he actually came over to be just the other evening and touched me on my arm to get my attention my heart all but stopped.
Conor had left his drinks bottle on the table beside me and when I looked at him he had the most lovely smile on his face, he used his sign language and signed “Mammy, open”. I just burst out crying because it has been years upon years, nights of dreams and days of wishing that one day my most lovely Conor would “say” my name again. He may not have “said” the words using his mouth but he said them loud and clear with his heart and his hands.x He of course started laughing when he saw me crying and hugging him. I told him just then how much I loved him and how proud I was of him. Hailey gave him the biggest kiss on top of his head and said “good boy Bubba” (her pet name for him)
He was so thrilled that he used his sign language and we knew what he was trying to say! He spent most of that evening bringing over his favorite mini – packets of chocolate biscuit shapes and each time would sign “mammy, open” with a cheeky grin as he was chancing his arm lol! But I couldn’t say No after all he had achieved that evening. He went to bed that night with a belly full of biscuits and smile on his face. I went to bed that night for the very first night in so many years so happy, so delighted for Conor and realized when your dreams do come true, you know in those moments how precious your life is and that of the people you love.xx
I have waited so, so long to “hear” Conor, and I would have waited forever more but I am so glad he finally found his voice again. I am hopeful still that his words will come back now that he has such a greater understanding of language and that by communicating we can finally understand each other. My broken heart has started to mend a little thanks to my brave and most lovely Conor.xx
Do not lose your hope.x Your little boy or girl are just waiting until their most perfect moment to reach out to you and when that moment comes your life will change for the better.xx
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