An open letter to my friends and family

Dear friends and famiy,

I love you and appreciate you so much. Your thoughts, your support and your prayers really encourage me. But I know that sometimes I hurt you because I am not able to come to things that are important to you. I really am sorry. This letter is not an excuse or even a cry for sympathy, but rather a letter to explain my heart and my actions because I realise that things are not always obvious. It appears sometimes that I ‘back out’ of things at the last minute, or I just plain so ‘no’ to things you find hard to accept. I am also much less able to commit than I ever was before. And even when I am at things I am tired, poor company, very distracted and seem pre-occupied and uninterested in being there. My mind and heart are elsewhere.

I am a mum. Like all mums my children are always in my thoughts. But the needs of my children are very high. And, although in lots of ways my life is like any other mum, is so many ways my life is very different. Everyday is very stressful and nights are very interrupted and don’t last nearly long enough. I am permanently sleep deprived. So if I forgot about your party invite, or that coffee date, or your birthday, please forgive me. One day runs into the next and my diary is bulging at the seems with appointments for two disabled children plus my own affairs. This year I will try and get the balance right even if at times I only get to send you an e-card and online voucher. It isn’t because I don’t care. It is only because there just wasn’t enough hours today. Or yesterday. Or the day before. Belated birthday cards seem to have been invented for people like me, but even then how belated can I really send it? A week, two weeks, a month? It would be better to send an early one for next year sometimes instead.

I do feel bad and guilty at times and even reminders can get forgotten when my child is screaming for dinner and the other requires an urgent nappy change. Please continue to give me grace and patience.

And please most of all extend that grace and patience to my children. They both have autism. One of the biggest ways that affects them is in social interaction. There are some major family and life events that it is just not possible or practical to bring them to. Babysitters are very rare for special needs parents and even if I can manage to arrange one there are certain times of day like bedtime and dinner time when my son is just totally unable to accept a change of person. So if your event clashes with dinner time or bedtime for my kids I have to put them first. One days change of routine and change of person can affect both my children for months. To leave the house, even without the children, takes military planning and co-ordination and my mobile phone HAS to be on. And that is why I may seem distant or quiet.

And if I do have the children I am even more pre-occupied. To have come to church today or to your house to visit or even to an everyday event like softplay has taken a lot of explaining to and talking to my children. I have probably had to google the place and show my children pictures or I have taken photos in the past. My son will have screamed most, if not all, of the way to the event as we have taken him somewhere other than school. I will have had to remind him where we are going at least ten times. Every stop, be that traffic lights or junctions or slow moving traffic, will have caused further screaming. I will have wondered if we will even make it at least half a dozen times. The event may be close to home but we will still all arrive exhausted. And it will always be touch and go if my son will come in. The lights could be too bright, the music too loud, the place unfamiliar and the people too stressful. But most of all the doors could be far too entertaining, especially if they happen to be automatic!

If you have a buffet my son will not understand that social convention means people usually access this after some level of social interaction. We might see people first, he sees food. My daughter sees stress. And even though it might appear I have eyes in the back of my head, I don’t. So watching two unpredicatable and stressed children is very exhausting.

If I visitted your house this year and my son caused chaos I am sorry. He used to be fixated with water and would seek out anywhere he could find this. Unfortunataley when you are only 1 metre high the best place to locate this is in fact the toilet! Though this still interests him he is currently fixated with beds and will think nothing of climbing on and under the duvet of every bed in your house. Whilst his twin sister is glued to me and knotting herself around my legs it is hard to truly keep up with her twin brother. I wasn’t being paranoid when I asked if you could lock your doors. It is common for him to escape. And that wasn’t lightening we saw that day. It was Isaac switching lights on and off continually. And yes he did help himself to food in your house without so much as asking. Sorry.

I need you to know dear friends and family that this is autism. This is my life. I have tried discipline. I have tried training. We are still teaching him. But this is very real sensory and ritual behaviour. This is autism. And this is why when you invite us round I often say ‘no thank you.’. It is because it is stressful; for you, for me and for my children. It isn’t because I don’t care. It is just easier to stay at home.

I am not being anti-social. I am looking to my children’s interests. Weddings, family get together, christenings, parties, family meals and church events of any kind are almost impossible and extremely stressful for me. If I bring the children it is chaos. Or I become invisible all night watching my son playing at the automatic doors or running up and down a ramp or flapping at the lift going up and down all night, while my daughter is hysterically crying for mum. If I come alone I know I am going home to screaming children and one thousand questions from my daughter as to why everything was done differently tonight. Or to a sick child from head banging.

So thank you for understanding. Thank you for inviting me to things even when it feels like I never say yes. And please keep inviting us. We might be having a ‘good day’ and be able to come for a little while. We might have enough time to prepare the children or get that rare sitter. Forgive me if I look like I have come in fancy dress as a cleaner. I probably cleaned something you don’t want to know about just prior to leaving home. Or had a handful of baked beans rubbed into my back that I wasn’t aware of. And forgive me if I leave early. I am exhausted physically and mentally. I eat, sleep and breathe my children. So naturally it is my only real conversation topic too. You see they are my full time job, my hobby, my family, my everything. I don’t get out much. Sorry if I bore you talking about professionals, and hospitals and things you take for granted like eye contact.

So thank you for sharing your events on social media,by email and in your blogs. I want to see your wedding pictures, your birthday party snaps and your summer holidays. It is like being there but without all the stress. I know you want us there and I truly appreciate that. But sometimes life doesn’t go as you expect.

I have two disabled children. I have two beautiful children. I have two amazing children.

lolly naomi2 twins1

and they are my priority.

Thank you for appreciating that and loving and supporting us. It might be better if I say Happy Birthday, Congratulations, and Happy New Year now in case I miss your events in future. Don’t lose contact. I love texts and messages and even the odd card in the post. I am still here, even if you don’t see me as much as you would like.

And I still care and love you all.

With love,

Miriam.

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6 thoughts on “An open letter to my friends and family

  1. Hi there totally understand wer u r. Same here avoid rather than b stressed with us all. Im fortunate enuf my kids cope a bit with the changes with minimal lash back. My sister is plannin a wedding with me as bridesmaid and am dreading it due to kids and so busy a place etc. Totally get wer u r. Chin up ur not alone xx

  2. It is always a pleasure when you all visit here. Isaac runs in the garden and laughing as he does so. I thoroughly enjoy it and the excercise is good for me. Naomi confidence has improved dramatically and she really enjoys life. You and Nigel take care and this uncle will always be around when needed.

  3. I can completely understand how you feel we are going through the same. Life is so lonely at times but people just don’t understand do they? I have 3 with autism and I have learnt so much from them especially how they see the world, amazing.

  4. I am reading this and nodding. My kids’s needs are not as severe but when my eldest asked today if we could visit a local inn for my birthday my heart sank. My youngest really struggled desperately to cope the last time we went, with all the preparations we could think of, and instead of an enjoyable evening out I wanted to be home, where I knew she could be herself.
    You write wonderfully Miriam, you explain so clearly what it is like to think and plan every waking moment.

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