Day 11 of 22 days of 22q awareness. #22qawarenessdays Speech and language delay. When Lucia was just under 2 years old I took her to our health visitor as I recognised her speech milestones were not being met. From the very first minute she was born her voice was so tiny, she was as quite as a mouse. A family member once asked me how I heard her cry in the night when she was hungry! Lucia made very little noise including laughing or crying and was as good as gold. As she grew she was not really a babbley baby and would point and pull you towards anything she wanted. As it became obvious she did not have a typical speech pattern she was referred to a speech and language therapist. They watched her eat food, noticed it took a long time to swallow and that she made little eye contact and of course that she made no noise at all. Lucia had early intervention and help with listening skills, intense individual speech sessions and group therapy sessions. Lucia also learnt Makaton Sign language which, my goodness, did that make a difference to our everyday life! When Lucia was ready for P1, which in Northern Ireland is the first year after preschool, we as parents had to make a decision on what school to send Lucia to. She had a statement of needs completed. This journey was another one that tore at both myself and Lucias dad emotionally. I have mentioned before a feeling of grief, grief for your child not getting to lead a typical life. We understood that Lucias foundational years in education are so very important and that she needed the best possible start to help he reach her full potential. Again all this is logical, but emotionally we wanted Lucia to fit into mainstream school! We did not want her to have the challenges she was facing with listening , comprehension, speech and language. Specialist schools are amazing places and can be so undervalued in society. The school we finally choose, Killard House school in Donaghadee is an amazing family feel school where each child is a valued member. They have individual education plans which are tailored to each child according to abilities. Lucia was given a place in the speech and language department and has made amazing progress since joining in September. She tries so very hard and I am delighted by the staff and their daily continual efforts. Obviously Lucia gets a lot of backup at home, as with any typical child it is of such importance that parents are involved in the education of their children. She continues to amaze and delight us and as her confidence and ability grows so too will her vocabulary! Many children with 22q have palate problems from obvious cleft palates to non obvious VPIs Lucia is currently under investigation for these issues and we are awaiting outcomes of recent video X-rays to determine if anything needs addressed in this area. at this point I want to highlight the benefit of being part of a support network with other 22q families, both in this country and across the entire world. Seeing the progression of some of the older children with 22q gives me such amazing encouragement and delight!
Posted on: Wed, 07 May 2014 17:53:18 +0000
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