Lucy* has two daughters with another one on the way. Lucy’s* eldest daughter who is 17 was diagnosed with Asperger’s Syndrome and ADHD when she was a child. Lucy* says:
“Rebecca* hit all her milestones really fast. She was quick, very smart, and articulate. But I was young and didn’t have much knowledge and we started noticing issues presenting with social interactions. At the age of three she said to another child; ‘Did you know that the main diet of a ladybird is aphids, commonly known as the green fly.’ The other kid looked at her as if she just landed from another planet, laughed, and walked off. I could see the rejection on her face and that has been one of the hardest things as her mum to bear. I know how smart and cool she is, but at different stages of her life it hasn’t always been appreciated, by her peer groups or other mums”.
Rebecca* is a gifted girl and as a young mum, Lucy* often felt ostracised by conventional social groupings. She said that she was often isolated;
The making of an expert
Lucy* didn’t get much professional help and support until Rebecca* was six and she was diagnosed with Tourette Syndrome. They went to see a Clinical Psychologist who said, “she’s a little miraculous human being, and she’s brilliant, absolutely, shockingly brilliant but she’s definitely got Tourette’s, ADHD and Asperger’s Syndrome.” Over the years Lucy* has taken Rebecca* to visit many professionals and found because Rebecca* struggles with eye contact that they often talk about her rather than to her while she’s in the room. There were so many different opinions and medications discussed that Lucy* decided to become an expert herself and went to university and got a degree in psychology.
Living without expectations provides freedom and joy for Lucy* and her daughters
Lucy* said that one way she manages is not to have any expectations and that she never compares her experiences as a child to those of her daughters. Lucy* talks about a birthday party that she held for Rebecca* and invited the entire class, and nobody turned up. As a mother, she felt utterly crushed, but Rebecca* wasn’t bothered in the slightest. She wanted the food, the dress, the music, but wasn’t fussed if anyone from school was there or not. Lucy* felt the rejection but has since learned that without those expectations, life gets a whole lot easier and happier.
“The key is not trying to use my own understanding or feelings as a reflection of her experience. It’s impossible and doesn’t work. There is no overlap. She doesn’t see the world the same as me and I think having a constant appreciation of that has kept us close. In our house, you have to accept brutal honesty and if you don’t want the answer, don’t ask. The ‘do I look fat in this’ might not elicit the response you are after!”
Letting her go, letting her grow
As for the future Rebecca* is keen to study politics, she has a place at the London School of Economics and waiting to see if she is offered a place at Cambridge University. This for Lucy* brings a whole new set of issues:
“Going to uni is going to be huge for Rebecca* and we’ve got to try and remove as many barriers as possible. I’m terrified in every single way. I see the challenges that she doesn’t know are to come, things she hasn’t tried yet, things she’ll want to do, and new friendships and relationships. At the same time, I see all the amazing potential of everything she could be.”
How Lucy* will be celebrating this Sunday?
For Lucy* and her family, the celebrations will be very much based on food. Katie*, Lucy’s* younger daughter who has some physical challenges will be in charge of the arrangements for the day, and with another little one on the way, we do hope that Lucy* gets a chance to relax and put her feet up for a bit.
Mother’s Day in a different way for Alexis and her family
Associate Family Consultant, Alexis Walmsley has bravely and honestly shared some of her challenges of motherhood with us. Simon, her son was born prematurely, is profoundly Deaf, has cerebral palsy and acquired communication and learning disabilities . Alexis also has a daughter Rebecca, who she says had to grow up very quickly after Simon was born.
Motherhood without the maternal
“When Rebecca was born, I wasn’t any good at the sort of getting down on the floor and playing; I had never done it with my own mum who just expected us to get on and amuse ourselves in the old-fashioned style and if I’m honest I found it quite boring. I really struggled with that side of being a mummy – I just didn’t know what to do. I’ve enjoyed being a mother much more since the children have got older. With Simon, I was encouraged to do lots of physio and activities to stimulate him, and it didn’t come naturally to me.”
When Alexis and her late husband finally managed to secure a suitable school for Simon, he had to go away as a weekly boarder. She says of taking him there for the first day: “ He had no idea what was going to happen to him. He couldn’t even sign mummy or anything then. So, we took this little boy in his new school uniform, and we left him with strangers.”
And how did Alexis feel about this at the time?
Managing Simon’s care needs is a full-time job for Alexis
Simon moved to his own home in 2013 and Alexis manages almost all of his support with a team of eight, including herself as a carer. If she wants to go away, she must have lots of backup plans in place as support can fall through at the last minute. In addition, Dimensions provides mostly evenings and sleep-ins and some emergency cover for Simon. Alexis recognises that at some stage in the future, her daughter Rebecca will need to take over an element of responsibility for some of this.
She adds:
“Poor Bex has had so much to process and deal with in her life and after John died, she has opened up about how she felt over the years, and It has been quite hard to contemplate as she has felt that she has always been at the back of the queue in the family. I grew up with a mother and a mother-In-law who strongly believed In putting their husbands first and I have to say that I appreciate this Is controversial these days, but I believe that if your marriage works, everything else will fall into place. And I had a fantastic marriage with my husband. If you’ve got your marriage right, the two of you can work as an incredible team – which is critical if you have a profoundly disabled child”.
Both Alexis and Rebecca have learned some BSL to help communicate with Simon. While Simon doesn’t sign fluently, he does understand a lot. Alexis says that she knows Simon so well that in addition to BSL she can interpret his expressions, and gestures to understand how Simon is feeling and what he needs.
There are many different tools available to help those who support people who communicate without words. Take a look at Our Let’s Talk About Communication Guide here. Have a read too of former Family Consultant Liz Wilson’s blog about siblings here.
Transition trauma for Alexis and Simon
When Simon was 16, he had to leave his boarding school and Alexis says the transition to the next stage was “hopeless”. She said it was difficult trying to navigate your way through and understand the possibilities, there was little help at that time available:
Alexis and her husband were given no guidance as to how to prepare Simon, and Alexis felt enormous guilt. He moved to the Manchester School for the Deaf unaware as to what was going on, but Alexis says that he knew something was happening as displayed changes in his behaviour while they were on holiday, not wanting to leave the hotel room which was out of character for him.
If you are need more information or are supporting someone through a transition please do have a look at the guide here.
What are Alexis’s plans for Mother’s Day this year?
Simon has already indicated that he wants to go to their local Italian restaurant, although this is for Simon’s benefit since Alexis is neither a fan of spaghetti nor pizza; something I’m sure many of us as mothers can relate to. She will likely be cooking Simon’s favourite of roast beef in the evening as that is something he loves and looks forward to.
A heartfelt thank you to Alexis and Lucy* for sharing so courageously their stories as mothers and both the joys and difficulties along the way. Wishing all you who are mothers a very happy Mother’s Day.