Out for Sunday dinner with sister & cousins
Third proper outing in the past month or so. At first we ummed and ahed about whether to take Chrissy with us as she woke up on Sunday in such an unsettled mood. Feeling torn is part of being Chrissy's mum. It's hard to know what to do for the best because she is so unpredictable.
The day got off to a difficult start. Chrissy was shouty & repetitive as I was getting her dressed, she then blundered into Alex's room and woke her up. Result one very stroppy Alex, who'd been up until 4am lesson planning for her new teaching job. 'If you take Chrissy I'm not going,' she announced.
'No, we'll drop her back.' I was hedging my bets. I planned to make up my mind once we got nearer the restaurant. Chrissy's ATU was very close by so we could do a detour if necessary.
On the journey there, Chrissy obsessed non-stop about food. We tried all the tricks, getting her to repeat our answers back: 'What did we say Chrissy?' Signing zip it up & 'yes' instead of giving verbal feedback & so on. Nothing worked but optimism prevailed. We owe it to Chrissy to keep taking chances on her and I banish memories of previous disasters. Onwards and upwards!
Our table was perfectly positioned in its own room. It wasn't completely private - people could walk through it to the garden - but it was a handy escape route for us too! I prayed that sausages, Chrissy's favourite, would be on the menu & that somehow we could get her to wait without kicking off. Ian was a star - he drew sausages, wrote s-a-u-s-a-g-e-s & got her to copy it, & asked Chrissy what she would be eating with her sausages. 'Is it tomato sauce?' 'Is it mashed potatoes and gravy?' A diet coke with two straws and no ice was duly served to Chrissy. She eyed it warily because it wasn't in her usual bottle or cup, and we breathed a sigh of relief when she accepted it, topped up with water, just as she always likes it.
During the wait for food, Chrissy grew increasingly curious about what was going on around her. She introduced herself to her reflection in a mirror on the wall above the table, then, clapping, flapping and talking at the top of her voice, she made her way, like a galleon in full sail, towards the main dining area. There was no stopping her so I grabbed her hand and managed to steer her past the bar and other dinners to the loo, then back again to her seat. People politely pretended not to stare and I politely pretended not to notice.
Ian then managed to divert Chrissy outside and I left him to it. Sometimes Chrissy can be overwhelmed by two people talking to her and directing her. After 10 minutes I went to check everything was ok and found Ian patiently pushing her on a very sturdy swing in the garden. The expression on her face was beatific. She was the most relaxed I'd seen her all day. Another item on the 'shopping list' for Chrissy's new home.
After dinner Chrissy nagged obsessively about pudding. After pudding it was 'I want sandwiches' but we got through it all without mishap and, although Chrissy's mood wasn't as good as it can be, she enjoyed her meal out. As Alex says 'it's like she was about to kick off but somehow she never did.'
Then came the part that tugged at my heartstrings. We took her back to the ATU and her face crumpled. 'I want to come home,' she sobbed. Tasha, a carer she really likes sat with her for a while & managed to distract her with a picture book. Then Chrissy called out 'bye!' to us quite happily.
I was told that she had been crying to come home in the week too. This is another effect of Chrissy waking up after medication changes. She knows all too well what she wants and she's telling us loud and clear. I can't put into words how torn & guilty I feel over this & I wouldn't mind betting that many other mums in my situation feel the same. I rationalise it by telling myself that she's an adult and most people her age live independently anyway but she's like a toddler - so terribly vulnerable; Ian reminds me that one day we'll no longer be around, so she needs to get used to living away from home; I remember how hard it was to let go when I first had to accept that we could no longer cope. It gets easier but the ache never goes away. You just have to find a way to live with it.
I am a SWAN UK (Syndromes without a Name) blogger
Hey Jane,
ReplyDeleteThis is such a touching post and I am starting to get to recognise a lot of what you are talking about. My daughter is getting older ~(she is 9 now) and it is getting more and more difficult for us to take her out to different places. I don't know whether this is because it is tough for us to deal with, tough for her to deal with or sometimes guilt for her disturbing other people's experience of dining out.
It is not a nice thing but I admire the way that you and you partner deal with your situation so well.
Keep your chin up and recognise what a fantastic job you do and how much you are an inspiration to other people.
Thank you so much Keith. Replies like yours are one of the reasons why I bother to blog. Very uplifting & helps to make me feel less alone as many of us face similar struggles. As I said on Facebook, I think the challenges are felt by everyone - the child, carers & those around us - but the onus is on us to manage them. Had some spectacular failures on that front but also resounding successes :-)
DeleteHi Jane i am a long way off with having Archie leaving home but i admit its hard now when we go out to eat, his food goes everywhere people stare, He doesnt kick off and tantrum but he is very loud with his clapping and very vocal that people stare all the time. He bangs on the table etc and some days i just think to myself why do i take myself to these places then i remember why because my son and everyother disabled person has a right to be seen out doing what everyone else takes for granted because if they didnt how on earth would they ever cope in the real world when i we are no longer a round xxxx
ReplyDeleteAnother insightful reply. Thanks Patsy. I shared your reply with a mum of a child like Archie who said that she finds it harder to cope with her husband's reaction to their child's noisiness than their child. Such a great point about not hiding our disabled children away xxx
DeleteAs always a moving and insightful post Jane. I am glad that the day out was successful and that you enjoyed it, although it sounds as though you had to remain vigilant so I imagine you were all still 'on edge'.
ReplyDeleteOh yes, LittleMamma, definitely on edge. Husband was wonderful - much more patient than me. We tend to swap caring roles when Chrissy is very challenging in order to stay calm with her. He definitely did the lion's share last Sunday! x
DeleteNever feel guity Jane, I admire your bravery so much. We still have Dan (21) living at home but I know there will come a time when we are too frail to cope and I dread that day. I smiled at your post, we went for a meal with Dan a few days ago and he spent the entire time locked in a repetative behaviour that resembles a nazi salute! He then went to the toilet and completely dropped his trousers to his ankles at the urinals. It's a good job we can laugh! Dan has no speech so at least we do not have that to contend with xxx
ReplyDeleteThank you Helen. So sweet of you. Laughed at your stories. The one about the urinals....a friend of mine has a son of Chrissy's age who also has a learning disability. They went for a walk in the woods & he HAD to go for a wee. His dad took him behind a bush & undid his trousers, then he was struck by a horrible thought - if anyone spotted them what on earth would they think! It does have its comic moments doesn't it? xxx
DeleteThank you for your candid sharing here-- I am high-functioning asperger's, married to my more classically autistic husband, and we parent 3 boys on the spectrum.
ReplyDeleteI just want to express encouragement to you regarding your quality choice to find appropriate housing/caregivers for your lovely daughter.
I admire your family's grace and courage in allowing her to have the quality of life she can enjoy. Sometimes, I even struggle in moderating my OWN behavior when on outings, lol! It's really a spectrum and so individualized-- you are great parents!
livewithautism.us
autismmediareport.blogspot.com
Thanks for your kind comments & for sharing a little of your story. I'm intrigued. Did you & your husband know you were both on the spectrum when you met or did you only discover this after you had children with ASD? I will read check out your blog :-)
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