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
Hi spectrum on. You could have written my story. My DS3 was fine when he was a baby, he was delayed in gross motor skills like sitting up and walking etc, but was very interested in everythema around him, eye contact, cooing, trying to say dada at 5 months.
But about 18 months old we noticed something wasn't right. He would look to the floor, wouldn't respond to his name.
We left it a while to see how things would go.
He he only stared walking just before his second Birthday, and he had very little vocabulary, wouldn't say mama or dada anymore.
He new his numbers to 9 though and could match them, and recognise them out of sequence.
We took him to the doctors who refered him to ENT. His hearing test failed, they said he had glue ear in both ears, and wanted to wait three months. They did this three times, and after three failed hearing tests, cronic ear infections, they decided to put grommets in.
I got really excited, thinking this was it, my boy would be fine after this and come on in leaps and bounds ( although my heart didn't agree)
7 months later, although his vocabulary had picked up, others areas are still clearly behind, and he has a massive obsession with animals. He acts them out all the time, walking on his feet and hands, making noises ( even when out in public)
he really struggles with two way conversation, and although he can answer some questions, is unable to answer how he feels, what he likes, what he has done that day etc.
he constantly says animal names, wanting people to copy him, and will repeat it until we answer him.
He he is about to start assessments for ASD on the 22nd April, which consists of a series of observations and a 3di assesment.