Published on 12, July, 2020
Hi All,
Finally feel ready to face my demons. It feels like I have been on this journey since my twins turned 1, have always been concerned about their speech delay and lack of interest in the world around them. Just before they turned 2 found out they had glue ear and hearing was impacted. once the grommets were in I thought surely the speech will come out rolling and everything will be alright. My DD behaviour started to deviate from my DS, she was trying to talk even if it was gibberish was always asking for our attention. The professional still seemed more concerned about her than DS. He remained quiet detached but loved his cuddles.... I just put down to his poor hearing. Time rolled on along came Jan 2015 and my DS got the diagnosis... Mild to moderate. DD still on the watchlist but her behaviour keeps on improving, behind in speech but tries very hard physically able and very creative/ imagination gone wild. Whereas my DS dx keeps becoming more clear...
We have been doing speech therapy since 18 months working on joint attention / pointing etc (it has become second nature), they both go to a mainstream preschool. Tantrums are few and far between, echolalia very noticeable someitmes in context sometimes just plain repetative. He seems to do some imaginary play and copies his sister alot. cognitive / gross motor skills behind his peers, hypermobility so very clumsy. We are waiting to start OT but are doing PT privately. statement process underway. using main principals of ABA , positive reinforcement, repetition but are not regimented.
Right now my biggest concern is will he start talking normally, will he be able to join a mainstream primary school successfully.
My thoughts are so fragmented I dont even know what to ask, I feel like I have alot to accomplish and not enough time. its taken 2 years for the professional to diagnose him and he will be 5 in 18months. Everything I read is about early intervention and we are trying the best we can but not like 20 hours of VBA / ABA.... everything is more like an approach we have integrated into our daily routine. He didnt have any speech early dec and now has an extensive vocabulary he can name most things in his surroundings / books etc. knows his colours / numbers upto 15 (can recognise as well), shapes, some letters, his name, nursery rhymes , ABC song (not very clear but he knows it) re-enacts stuff he has seen (e.g. 5 monkeys jumping on the bed ... with pretending pens are monkeys and drops the pen, DD pretends to wash hands he will bring a towel to help her dry her hands, DD pulls his hair he will say " go stand in corner). He has learnt some phrases he can say but struggles to join words himself but is good with using single words to communicate and maybe join 2 words sometimes. Some times it feels he is doing really well but other times I worry about how he will cope at school since I know he has a tendency to just get lost in his thoughts unless someone is with him continously to bring him back.
Sorry for rambling, just looking for some positive stories
Thanks
Louayre ,
Thanks for sharing your story and hope I could maybe be a source of inspiration.
I have to say it took me a while to come to terms with reality and come here opening up and dissapointed more people have not come forward to share their experiences to give hope. I understand no tywo children are alike but from where I stand it is very scary and positive stories outcomes/suggestions is what is going to help us keep strong and do the necessary to help our children.
Since my last post things are moving along smoothly and I do see some leaps in his development and maybe a few things becoming more pronounced.
I am sure you are trying everything to help him communicate but sometimes you may need to change your strategy. We had a speech therapist since he was 18 months and she made good progress on joint attention but then his progress plateaued so we stopped and took a break. we kept working on the fundementals while i tried to find a new speech therapist. The new one is make great strides with him and the change did him good.
I read this book called it takes two to talk (when I thought it was only speech delay.... none the less a very good book) there is also one called more than words which is for autism. My son never even tried to babble much before he started talking, if he ever made any sounds it was in his mouth with his lips closed. I am sure you know this already but we broke it down into steps language is like learning to walk it happens in stages. You mentioned he is improving eye contact which is fantastic as communication starts with joint attention... we encouraged this by making it difficult for him to access his toys, plastic containers, ziplock bags etc.... so he would have no choice but to ask. Training him to look at us before we would action what he wants. We still do this... when he wants a drink i will hand him a cup but wont let go until he looks in my eyes. everything is about repetition do it enough times he will realise what he needs to do inorder to achieve his goal. My niece is severly autistic and nonverbal she goes to a specialist school and since she started that she has improved dramatically... she is still not talking using words but does communicate in other ways.
Remember it is not a race it is a marathon as long as we are moving forward there is hope.
I hope it gets easier and if you want to know anything specific let me know will be happy to share my limited knowledge.
xxx