It all started so well...
I asked my youngest daughter, Alex, how she felt her life had been affected by having Chrissy as a sibling. She shrugged & said: 'I've never known any different.' She agreed that it had forced her and her brother to grow up too quickly and take on responsibilities beyond their years. Many instances that illustrate this are in my book 'Bringing Up a Challenging Child at Home.'
I felt guilty about having two more children when Chrissy was so demanding but I had no idea how severe her needs would be - caring for her got more challenging as she grew older & bigger. You expect toddlers to be a handful but Chrissy never grew out of that stage. Living with her extreme, unpredictable, violent mood swings day after day took its toll on everyone. Her siblings had to take second & third place & no child should have to do that. I've had to dig very deep in order to cope, & I've no doubt her siblings & my husband have too.
We’ve always tried to involve her in family activities and do things that typical families do but it's a gamble. You can't predict how she'll react. Many family outings have been cut short due to Chrissy's unpredictable outbursts but we have had some resounding successes, although admittedly not recently.
What happened at the weekend gives a snapshot of how Chrissy’s needs affect family life. She was in a jolly mood & we’d seen none of the major SIB of the past few weeks. She was engaging with activities we did with her, & was very inquisitive and chatty, delighted to have Alex around, who was home from university. On Friday evening, as I sat holding Chrissy's hand, I felt a gentle caress on my thumb. I looked at her in amazement and she was smiling benevolently at me! Chrissy hugs me but she's never caressed me before. On Saturday morning someone called round selling poppies for Remembrance Day. 'Which one would you like?' the seller asked. ‘A chocolate one,' said Chrissy, making us roar with laughter.
The signs were good and it was such a beautiful autumn morning, I decided to take Chrissy to the village shop, about 1/4 mile away. The photo shows Chrissy just after we'd set off. She seemed happy enough walking alongside me but kept asking 'are we having sandwiches for lunch' & swapping which of my hands she held. Halfway there, she got so obsessed by swapping hands, we got stuck. I tried to turn back but it was already too late - she threw herself on the pavement screaming & rubbing her nose until it bled. My stomach was in knots as I feared she'd strip off. I called Ian & he brought the car round to rescue us.
I shouldn't have risked it really but I still get fooled when Chrissy is calm. If I stopped trying to take her out I’d be giving up on her. Episodes like this remind me of the difficulties of balancing family life with Chrissy’s needs when she lived with us - but, as Alex says, we never knew any different.
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Thanks for sharing Jane. You do have to keep trying or, as you said, it is like giving up. I sometimes feel the same - my son is much younger, just 18 months but I rarely go out due to his unpredictable (and very serious) seizures. I don't want it to control our lives but it does. And then, when I finally work up the courage to make it out again, something happens - like the time recently I had to resuscitate him at the side of a dual carriageway - and I wondered why I ever took the risk of leaving the house in the first place. But although it often feels like one step forward and two or three back, I have to keep trying or risk giving up completely.
ReplyDeleteJane what a very informative post, it shows exactly the struggles we encounter and how a child with additional needs does stop us from living that "normal" life. It does feel like we go round in circles at times. I think your an amazing mum and you do an incredible job xxx
ReplyDeleteThanks both of you for your insightful comments. I really struggled with this one, wondering 'where do I start?' As usual, Chrissy led the way with her antics on our walk. As always, the issues you other mums deal with leave me feeling humbled. Life & death situations/more than one child with special needs. Helps to put our challenges into perspective xxx
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