I alone am this boy's mum
Sometimes I want to curl up in my husband's lap & cry & cry & have him tell me everything is going to be ok & that I am not alone but, I alone am this boy's mum.
I alone truly know him. I alone will be the one to take him on his unusual journey through life (his whole life). I alone will be the one who truly believes in him & knows what can or cannot be achieved & how best to go about it, whether I feel up to the task or not. For I alone am this boy's mum. There is no therapy for me, or rather, expertise for how to deal with his therapy if that makes any sense to you?
I do not mean to take anything away from my utterly amazing husband here either. He has his own journey to take through life with our non-verbal autistic son Henry. His importance, significance, influence, unconditional love & support I do not doubt for a second. Hell, I would be nowhere with this boy right now without my husband, absolutely nowhere.
But what if I don't have what it takes, or enough confidence in what I am doing to help raise this young boy? Nothing can prepare a parent for these things happening to their child. How much hope should I have? His autism is not going to get fixed or go away. What if I am not doing enough? What if I want to do everything I possibly can but cannot dedicate the time nor cope with the emotional strain, Henry has two siblings with needs of their own & need of a mum. Am I a carer now? Is it ok to have so much to be thankful for, so much more than others & yet still need what I know others desperate to help me cannot give because I alone am this boy's mum?
I fully understand how important it is for me to expose this fascinating boy to the world he lives in, to try to keep him engaged & interacting with others as much as possible but, there is only so much he can take, only so much they can take, & only so much I can take sometimes too. My stress levels are through-the-roof whenever we go out. I feel my anxieties overwhelming me inside when we meet other children who are so unforgiving & whose mothers are so judgemental. I cannot bear to think anyone would find my son horrible or weird or strange or rude but they do. This boy has the most gorgeous nature, an astonishing way of seeing the world, is such a delight & joy to me & is so so sweet but, no-one other than us parents & his immediate family are ever going to experience that.
It seems to me that even with the best therapies that time & money can buy, the biggest impact on these children's lives will still come down to the mother/main caregiver. And I alone am this boy's mum. Where is my weekly appraisal? Sure, coffees with other SEN mums do wonders, but they occur very rarely & all of our children are somewhere on a spectrum that once mixed in with their personalities makes our journeys so different. So whilst we can share in each other's trials & tribulations & comfort each other over stories about how cruel & judgemental people can be out there, there is no-one there to help you find your way with your own child as you lie awake at night feeling lost, sad, emotionally exhausted, anxious, deeply concerned & sometimes happy, encouraged, amazed, loved & even blessed too.
I alone am this boy's mum. I adore him, I think he is incredible & I will love, support, advocate for & protect him as any mother of her child I like to think would. I am, however, going to have to learn patience, be extremely good at it, learn to become thick-skinned & show/teach/enable/prepare this boy to cope with life in our world without losing the essence of who he truly is. It began five years ago when I first wrote the bulk of this blog & Henry was 4, it will continue every single day for as long as he lives. I cannot ever give up or give up hope. I wish I could wrap him in my arms & leave him be in his own world where he is so happy & content but alas, that would be doing him no favours & I couldn't possibly sustain it without sacrificing the rest of the family.
And to this boy whose mum I am, I love you with a love that goes deeper than any I have ever or will ever experience, thank you. You have taught me so much: about life; love; acceptance; pure joy; humility; patience; just being & about myself. You have made me stronger & kinder. I know you love me with a feeling you will never be able to describe or show, I can see it in your eyes & how deeply they reach into & can read my soul. I will have outbursts & moments of my own that have everything to do with me & nothing to do with you & you will never know or understand this. I am so sorry. I may need to step away for a bit at some stage in your life, by sending you away so other carers & professionals can build a rapport & genuine relationship with you & look after you for a week or two before returning you home to us & I pray you can forgive me for how difficult this will be for you at first. I do & will continue to make so many mistakes, frustrate you, confuse you, get angry with you unreasonably & so much more but, I promise you this "...I'll be there for you...you'll never be alone, I'll be there for you..." Jess Glynne.
Photogrpahy: Sarah Paylor @liveandbloomphotograpghy & Ros Birchwood