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Genetic condition/speech delays

NikkiandMason2NikkiandMason2 Member Posts: 9 Listener
Hello. My name is Nikki and I have an amazing 2 and a half year old boy, who has some developmental delays, one of which is more of a concern than others at this moment, which is speech. He has the delays but is reaching his milestones-just later than some of his peers. He was diagnosed with a rare genetic disorder (16p13.3 deletion) at around age 15 mos. I'm writing to see if anyone knows, or has advice on what has worked for their son or daughter and if anyone has any recommendations. I would love to hear what else I can be doing for him to encourage his development-especially speech-wise. We are seeing many specialists and are awaiting others..

Thanks! Nikki

Replies

  • americanabroadamericanabroad Member Posts: 9 Listener
    We work with a speech therapist who has suggested what she calls "Special Time". We get a tote bag and fill it with toys and household objects and let our son (nearly 3, SD) pull them out, choose which he is interested in, and direct the play. The aim is not to ask him questions but to comment and expand on what he's interested in. So if he pulls out a toy cow and says Moo, I'd say, "You've got the cow. It's a very small cow and it could say Mooo!" or something like that. We do this for 5-10 minutes a day and my son really enjoys it. I hope that's the kind of advice you're looking for!
  • NikkiandMason2NikkiandMason2 Member Posts: 9 Listener
    Thank you!!! I will try that
  • sarahprattensarahpratten Member Posts: 35 Courageous
    I would highly recommend you look at The Scotson Technique (TST) for your son - gentle exercises you do at home to strengthen the diaphragm and improve breathing which leads to many positive benefits. My son has global development delay and low muscle tone. When we started TST when he was 20 months old he was very quiet. Within a month as his breathing got stronger he started to babble - now at age 14 he doesn't stop talking! there have been many benefits of doing TST exercises - his digestion improved and his body structure and therefore function improved; he started walking at 2yrs 3ms and stopped spending time in his own little world; his sleep improved etc.

    I hadn't been aware my son's breathing had been weak, but it was obvious once it was pointed out to me (if in doubt, this can be measured). I now realise that it is usually the case that breathing is weak where someone has a brain injury or condition.

    Of all the therapies I have tried with my son this has been the most beneficial, without a doubt. You have to be prepared to invest the time each day to do the exercises, but the results make it all worthwhile!

    See: www.advancecentres.com

    Best wishes,
    Sarah

  • Hi Nikki,

    May I ask if you have been referred to your NHS Speech & Language Therapist? I would expect you have been but thought it's worth checking. If not you can self refer easy enough.

    I would recommend an assessment with a SLT so that you have an objective view as to what his strengths and needs are in relation to his peers.

    Very best wishes


    Chris
  • NikkiandMason2NikkiandMason2 Member Posts: 9 Listener
    Thank you all to have commented. These are things I have yet to try and will do so at your recommendations. Thank you!
  • NikkiandMason2NikkiandMason2 Member Posts: 9 Listener
    Sarah, I forgot to ask, and meant to. Would you mind me asking what the cause-if any-is of your sons Global Developmental delay is? My son also has this-recently diagnosed. I was also wondering how well he did reaching the rest of his milestones and how he is doing academy now that's he's 14?

    Thank you, Nikki
  • sarahprattensarahpratten Member Posts: 35 Courageous
    Hi Nikki, We do not yet know the cause of Will's GDD - we have always been told that it's probably something genetic but various tests over the years have all come back as negative. We are currently waiting for a new set of tests to come back..
    He went to mainstream school until year 5 and then transferred to a special needs school. His reading ability is good, but he struggles with maths. He is quite bright in his thought process (and has a very good sense of humour!). Due to his low tone, handwriting is tricky, but he uses a laptop instead. He is generally very able on a computer.
    Best wishes,
    Sarah
  • NikkiandMason2NikkiandMason2 Member Posts: 9 Listener
    Thank you, Sarah!
  • Natasha BrownNatasha Brown Member Posts: 112 Courageous
    Hi my son has microdeletion (17q22.31). Have you looked at unique website and connected with others with same deletion ?

    Speech - focus on total communication uses signs makaton photos symbols to support his communication. My son us 18 now and has no verbal speech but communicates fluently at his level ring words on a communication app on ipad. He has one or two makaton signs but PECS and then dynamic voice output device swing it. Some kids with his deletion have speech albeit they had delays in acquiring it. Reading books together. Pointing at pictures. Doing letters pointing out his name etc. Communication is not just speech so work also on other forms of communication to reduce frustration.
    Photo diaries of his day familiar people favoured things are good tools for talking and for him to communicate.

    Keep up constant stream of naming and describing in simple language when put and about.

  • NikkiandMason2NikkiandMason2 Member Posts: 9 Listener
  • EmmaEmma Member Posts: 88 Connected
    Hi Nikki, please do also check out these great tips for encouraging communication skills and development from other parents and professionals: https://community.scope.org.uk/tips/verbal-communicatuion
  • NikkiandMason2NikkiandMason2 Member Posts: 9 Listener
    Thank you! Quite helpful! And everyone's feedback is fantastic! Thank you all!
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