It can be bittersweet sometimes watching the boys as they play happily on their own. Peeping through Conor’s bedroom door I watch as he happily throws his Angry Bird Teddies up, up, up in to the imagined sky I think he sees above his head. I find myself just then swallowing down a deep sorrowful pain I can feel rising in my chest that always seems to start in the pit of my stomach somehow. It feels sort of like a balloon expanding but pushing up, up, up into the sky waiting to break free just like Conor’s teddies but it is the most sorrowful and painful feeling I have ever experienced in my life. It comes and goes and can catch you off guard sometimes just like one of Conor’s “flying” Angry Bird teddies which have been known to “ping” you on the head when you pass Conor’s bedroom if his door is open. His teddies much like that sorrowful feeling can catch you by surprise and steal the peace you thought you had in your heart.
Jack just like his big brother Conor loves to play on his own, I know he loves me but for the most part he likes to be on his own, playing in his world, lining up his toy cars, listening to Bingo the Dog or Wheels on the Bus. Sometimes I think if I hear “The Wheels on the Bus go round and round” one more time my heart could burst with the pain I feel inside. Not because I can’t bare to listen to it the million times a day Jack has it on repeat but because I know that in some way on some level that is how Jack copes in our world. Having his songs on repeat all day long reminds me that just like me he is doing his best to cope, to live his “normal” in our world.x
Intellectual Disability Diagnosis
That’s the thing with being a Special Needs Parent you just keep going, you don’t really know how or where you get that resolve from, you just have it, somehow, you have to. I was speaking to Jack’s lovely Consultant the other day in her Autism Clinic and I was asking her about Conor now also having an Intellectual Disability (he was diagnosed after Christmas this year), I guess I was trying to find that definitive answer all parent’s seek when they see their child struggling, I wanted to know was it my fault, had I done something wrong in the way I had been raising Conor since he was born that would have given him an Intellectual Disability.
I don’t always wonder about Autism and if it was something I “did” that “caused” both my lovely little boys to not be able to speak, to both be on the Spectrum, it crosses my mind of course sometimes but I have learned through copious amounts of research, that no, I as a Mother did not cause my boys to have Autism. Somehow though no matter where I looked I couldn’t find that same answer I so needed for just one person to tell me definitively that “no” I didn’t do this to Conor, that I did not somehow unknowingly or unwittingly give my little boy an Intellectual Disability that would most certainly ensure on some level for the rest of his days he would struggle.
That sense of guilt I felt that first night Conor was on this earth with me when I couldn’t get my lovely little baby boy to sleep still follows me to this day. For the most part I can shake it off,but sometimes just like that dark sorrow I thought I had buried deep with in my heart, it can return.
I don’t think I took one single breath the other day while I waited for Conor and Jack’s Consultant to tell me emphatically either way that I did or I didn’t do this to my little man. My heart just ached and I remember wishing to God she would tell me no, it was not my fault. I didn’t want to hear that so I would feel “off the hook” so to speak but more so that I could look Conor in the eye again and know I did and I have been doing all I could do to help him. That guilt I have been trying to shake off for the last six years since Conor was born sometimes over powers me and I just want to escape back to the world I lived in before I knew my son had special needs: as in that world nothing ever seemed so bad as with a little work or if I tried a little harder I could overcome what ever challenges life threw at me. Now though I always feel less, always feel like I should be doing more, I could have helped Conor here, should have shown Jack this, there. It never ends.x
The Consultant’s words have stayed with me since she uttered them because in a way she has given me back my peace. She said Conor having an Intellectual Disability is not nor ever will be MY fault. She said it was “God given”, in God’s plan for Conor, that nothing I did then or could do right now would ever change the path that was laid out for my gorgeous little boy.
It doesn’t make the pain any less, it doesn’t make me feel any less blame but somehow I feel different, sort of like, I can keep going now, I can cope again.
God Given. I never thought two words could bring me peace and yet they have. I don’t feel any less “off the hook” then I did the moment just before she said it to me but it has helped to refocus to what is important- the diagnosis remains the same for each of my boys, but how I think of their diagnosis has changed now as I know it will change as they grow up and change themselves.
IT IS NOT YOUR FAULT
I think that is one of the most powerful things I ever been told as a parent of a child with Special Needs, that “IT IS NOT YOUR FAULT“. I wish all those years ago when I first started out on the Special Needs Road with Conor, if one person had told me just then that it wasn’t my fault I think I would have coped better, I wouldn’t have spent every waking minute blaming myself, crying myself to sleep with the guilt I felt, berating myself for all the things I should’a could’a done better.
I wish now I could go back in time to that very moment I was first told Conor had Special Needs and I would give myself the biggest hug, I wouldn’t let myself go and I would keep telling myself it is not your fault, you have done the best you could, no body could have done more then you did. I remember that terribly lonely feeling of not knowing what was the right thing to do for Conor or what was the best decision to make that would make his life better for him. All we had was each other: my husband and I. We didn’t have one other person we could turn to who we knew that could help us.
When I meet other Special Needs parent’s now and I find they are struggling I always tell them you are doing your best, don’t blame yourself for what you can’t change.x I am a hugger so of course I give them a hug and tell them they are not alone, life is hard, it may very well get a whole lot harder but you are not alone and you are not to blame for how things have turned out for your son or daughter.x
I have learned to accept that Hailey, Conor and Jack love me no matter what. I am sure if I could magic myself in to an Angry Bird in the morning Conor would be ecstatic or if I could produce a live Yellow Bus who’s wheels turned round and round all day long for Jack in his bedroom he might just love me that little bit more. But I also know that no matter how much guilt I feel, how much I blame myself, my son’s and my daughter will always love me just the same whether I can magic up amazing feats or whether all I can do is love them with every possible part of my being, they will always love me and I will always, always love them.
Take the advice the Consultant gave me the other day and that is to remember it is NOT your fault, you are doing the absolute best you can right now, and nobody can do more than that.
Sending hugs to all the parents who need it right now.
As always thank you ever so much for taking the time to stop by Little Puddins. Thank you for helping to raise awareness on behalf of Special Needs Families just like my own living in Ireland.
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