Mum Lauren talks about how Cerebral Palsy Scotland has benefitted her daughter.
Our daughter Lola loves being around people. She is one of those children that people just gravitate to because she is so smiley!
I am Lauren and, together with my husband Ross, we live with Lola and her sister Maddie near Elgin in the north east of Scotland.
When you have your first baby you just assume everything will be okay. Lola’s birth was very traumatic and she was in the neonatal ward for 13 days. It’s just something you don’t expect and it was heart-breaking.
Doctors told us there was a possibility she could have cerebral palsy. It’s a case of being told to “wait and see” and that’s hard. No one can give you concrete answers as to how things will be in the future.
At six months old Lola developed infantile spasms which are awful seizures that affect brain activity. They steal away a child’s milestones and caused her to regress and she lost her smile. She got through that and stopped having the seizures but, since then, progress has been slow.
Lola was diagnosed with cerebral palsy when she was about 12 months. Physically she is very affected by her cerebral palsy and we support her with every aspect of life – dressing, feeding, play.
It is difficult to get support. It’s not until you have a child with additional needs that you really realise how sparse the services are. It’s really quite shocking.
Her physiotherapist was great but we didn’t get to see her as often as we wanted. When she recommended Cerebral Palsy Scotland I was so excited that we could do more for Lola.
Before Covid we had a series of therapy sessions at the Cerebral Palsy Scotland centre in Glasgow and further sessions with their therapists in Inverurie through the charity’s outreach programme.
Lola is non-verbal and in those sessions we worked on her making a sound to identify what she wanted to play with. We went away from that and really made that a part of our daily life with Lola. That has benefitted Lola because it has given her a voice. It was massive for us because no other therapist had shown us that. It gave her a voice to be able to make choices, so that she can be active in whatever we’re doing.
Then Covid happened and we were finding it difficult at home with Lola. We have to support her to play and we were running out of ideas and motivation. So we contacted Cerebral Palsy Scotland and were offered some virtual sessions with the therapists.
Lola had recently got a special chair to allow her to sit on the floor. The first thing Sandra our therapist did was help us tweak the chair so Lola was much more comfortable and positioned better in it.
That has meant we can use the chair more and, in turn, that has helped Lola’s relationship with her sister. Maddie might be sitting on the floor doing a jigsaw. Lola can be there and watch and pick up the jigsaw pieces and be part of that. That’s what those virtual sessions helped us achieve.
To be honest, I dread to think what would have happened to us if we hadn’t found Cerebral Palsy Scotland. It’s sad to think of what we wouldn’t have learnt.
That is why it is so important to have these amazing therapists available for people. Families like us would be in a very different place without them supporting you on the journey.
