Where we’re at

I can’t believe I haven’t posted since June! What an amazing Summer we’ve had here in the UK. Autumn brings a rash of family birthdays leading up to Christmas, starting with Mia. Mia’s birthdays have always been a bit of a pleasure/pain thing for me. Even her 1st, when it was starting to become clear that, maybe, something wasn’t right. Then, each one was yet another year passing with no speech – piling more worry onto the already deep-seated, all-pervading worry that was a permanent backdrop to everyday life. Inviting friends with children to make it feel like she had friends to celebrate with, when we all knew she had no way of forming a relationship with any of them really.

After each one, sad as it sounds, I would go through a period of despair. Will she ever speak, have friends, have a normal life? I still don’t know the answer to all of these, but this year, for the first time ever I am confident she will speak. Everyone who came to her party this weekend commented on the obvious improvement – spending time with Mia in her own environment at home gives a chance to see what is happening. Words are clearer and communication is more elaborate. Don’t get me wrong, there is a long way to go before the answer to the last two questions – will she have friends, will she have a ‘normal’ life? – will be ‘yes’. But this year there is no despair. I am not going through my annual grief. The anxiety is still there, the feeling that I am never doing enough, and if I was doing enough how much faster she would move forward but I think everyone has these feelings. Mums, speech and language therapists, teachers, teaching assistants. The answer would be our own, personal speech and language therapist working with her all day everyday! That might be enough, but sadly not realistic. Although that is exactly what I would do if I won the lottery!

We had been working on ‘p’, ‘b’ and ‘m’ as initial, medial and final sounds. These are bilabial sounds – being made with the lips together. They are clearer, but everything seems to need constant practice and work to tweak and maintain! Use it well or lose it here! We have added ‘t’, ‘d’ and ‘n’ which are alveolar sounds – at the front of the mouth. Then when these became secure we went onto ‘g’, ‘k’ and ‘h’ which are velar sounds – at the back of the mouth. She has all of these – apart from the odd mix up with ‘t’ and ‘c’ – pretty solid during practice. The main issue remaining is the breathing and voicing but, importantly, she is learning to self-correct! I think this is something that comes with practice, a bit of maturity and, now developing, self-awareness. Now I do a daily mish-mash of alveolar-bilabial/ velar-alveolar/ alveolar-velar etc etc to try and get some flexibility. Mia has to think and focus hard but copes really well with this! The words obviously repeat lots of vowels too so these are also becoming more accurate. I have been using these apps a lot

https://itunes.apple.com/gb/app/speech-therapy-for-apraxia/id586636734?mt=8 which does whole CVC words,

and

https://itunes.apple.com/gb/app/speech-therapy-for-apraxia/id512647583?mt=8 which is CV and useful for reminding Mia to not always put a consonant after a vowel. It’s all coming along nicely!

I am doing reading out loud with her where we read the words together, which seems to help a lot too. Doing it with me leaves less room for mistakes, but she is practicing getting her mouth around whole sentences, which is not what she would be doing under her own steam. She will say lots of words or approximations now, sometimes a few simple sentences. Sometimes strangers can understand a word here and there!

The speech therapists have got us started on a specially tailored language and learning programme. This is building in speech and language work around topics that we are covering, which are those Mia is interested in to help keep her motivated and focused. As her speech and communication develops her language impairment becomes clearer, and we need to work intensively as Mia will allow to address this.

That’s it for now, folks, all good news! Thanks to our supporters for helping us to maintain this amazing approach for Mia! What a difference a year makes this time : )

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4 comments on “Where we’re at
  1. Deirdre McCarthy says:

    I know it’s natural but never feel you’re not doing enough. What you have achieved is truly incredible. If anything, you try to do too much, for everyone. Who’d have believed, a year ago, what we’re seeing from Mia now? I’m sure Mia WILL lead a normal life and will definitely have friends. And that will be thanks to you.

  2. margaret says:

    Hi,
    I just recently came across your website and wondered if you have any advice for getting a speech therapist who specialises in PROMPT. My daughter is aged 10 and is non verbal. She has a sort of dysarthria and Worcester drought syndrome. She is good at communicating with makaton but I really want to try and bring on her vocalisations. She can say “mama” and tries to say “daddy”. she only has vowel sounds at present but can say some consonants. We have had Nuffield therapy in the past and this helped but the slt has now moved to another part of UK. We live in Middlesex, UK.
    Pls advise if you can and is your daughter saying a lot more now that she has had input. What worked best?
    Hope to hear from you soon.
    M

    • nibby says:

      Hi, it’s a tough one as I am only knowledgeable about Mia and her condition, and what works for her may not work for your daughter. Finding the right therapist and approach is the hardest thing, and takes some luck and perseverance. The great SLTs are also very busy (for good reason!), and getting onto their caseload can be hard too! You could try approaching http://www.rcslt.org/ to see if they have any recommendations of anyone in your area that has a particularly good reputation for complex cases. Also, if you are interested in PROMPT contact them through their site http://www.promptinstitute.com/ and they should be able to advise you of anyone in your part of the country.
      I found TalkTools (TT) to be of great help, as it helped Mia build up breath support to enable speech. You need breath to speak, and to be able to maintain outbreath during vocalisations. This needs to come from the diaphragm. Also, TT helped strengthen Mia’s muscles around her jaw and tongue too. Professionals had looked at her and thought as she didn’t dribble, could perform motor movements e.g. stick out her tongue and so on, then a TT type approach was not necessary but I disagree. One SLT looked at her, saw what was happening, highlighted the need and we got on with it with great results.

      We practice speech all day everyday, encouraging vocalisations and practicing and modelling them for Mia. It is part of our life. We have done Nuffield, Core Vocabulary anything to see what works! I found that sometimes for Mia, it was easier to learn a whole word and then isolate the sound e.g. we got ‘t’ by working towards saying ‘two’ then trying to isolate the ‘t’. It’s all trial and error and depends on the individual and may vary over time! I do hope you find your answers! Best of luck!

  3. Donna sharp says:

    Thank you for sharing mia’s story although you are going through dispair.
    My son and I relate to your experiences like a mirror of our own anxieties and anguish.
    My son is 3 years and seven months and is non – verbal.
    Same traits as Mia ( lost, fustrated, high pitch screams lasting hours, crying in his sleep )
    We too have a sen speach therapists once a term and my frustrations boil over with the lack of provisions provided.
    James has disabilities too: hypo mobility syndrome with associated learning difficulties along with his disabilities he has gross motor development delay so day to day living from birth has been very difficult.
    I fight for James’s needs every day and hope he too will fit in to the normal activities.
    James was unable to walk till he was nearly 3 yrs old and being a petite single mother/ carer has had its toll on my physical/ mental needs.
    I’ve had my fair share of break downs, depression etc and feel like I’m on constant shifting sand.
    Thank u again for making me feel like I’m not alone.
    I too am looking for extra high needs funding as James’s funding for education is being cut from 30 hours free to 15 hours free funding.
    We pay for hydro therapy swimming as it’s good for sensory ) lights, music strengthening muscles etc as now he is walking physio has cut his therapy full stop although he is still very wobbly, often in pain, falls over.
    We was prescribed melatonin to help him sleep but again James wakes three to four times a night and can’t tell me what’s wrong.
    Behavioural issues are now coming into force hitting, lashing out.
    I’m one exhausted mother! Thanks again.

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