Communication: The journey thus far

Imagine this for a moment …a person having words and ideas in their head that they cannot express, and when they try to express themselves other people may not understand what they are saying. As Temple Grandin (an autistic adult) says “when I was 4 I had words in my head that I didn’t know how to get out, so I would just scream.” I can’t begin to imagine how frustrating that would be.

After my son’s diagnosis of ‘classic’ autism a speech assessment was completed for Kiddo at 20 months of age. He had the expressive and receptive communication ability of a 3 to 6 month old. At diagnosis I remember being told by a professional that about 50% of people with autism are non-verbal (probably not the best time to be told this!!). I was in shock. I felt unparalleled levels of desperation and despair in those early days about the very real prospect of maybe never hearing my own child’s voice.

There has barely been a day since that I have not ‘worked’ with my son on communication. So, in point form, this is the journey thus far…and, believe it or not, it did not start with ‘talking’…that was to come much, much later.

  1. Safety. There was no point working on ‘talking’ when my child was not safe. At diagnosis my child was a danger to himself, and had to be taught safety skills through behavioural therapy. We started on an ABA program modified to be appropriate for my son’s young age and it included a Functional Behavioural Plan. ABA also included Discrete Trail Training, Pivotal Response Training, and Applied Verbal Behaviour to address other goals.
  2. Sensory Processing Disorder. Until we were able to get our son’s sensory needs (mainly proprioceptive and vestibular) met in a more adequate manner there was no learning to be had. He could not learn because he could not focus and he could not manage his own body. He could barely stop moving. When your body is not calm every task is difficult.
  3. Routines. Familiarity and security had to be provided to my son through external structures and routines to help order his ‘disordered’ internal world.
  4. Eye contact = Out, Joint Attention =In. The D.I.R training started for all three of us (a therapeutic approach developed by Dr Stanley Greenspan) and we worked on engagement and joint attention daily. (ABA and DIR. No problem.)
  5. Pointing. Distal and Proximal Points. This was part of developing an adequate gestural (and later signing) system. Plus following my (and other peoples) points.
  6. Hanen Parent training. I attended numerous training seminars and courses plus had ongoing coaching from various therapists.
  7. PECS (Picture Exchange Communication System).
  8. Speech therapy using the Millar Method to incorporate my sons need for movement in the learning (see http://www.millarmethod.com).
  9. Visual icons, schedules, and photos
  10. Babbles…jargon…vocal play…word approximations (‘Na’=Nana or Banana)
  11. High Affect. Animated voice and face.
  12. Typical Peer modelling (see previous blog post on Alexa’s PLAYC)
  13. Video Modelling
  14. Receptive, receptive, receptive skills…then more work on receptive skills…It was like a mantra. We don’t want to just THINK he understands-but does he REALLY understand?!!
  15. Generalisation of receptive abilities. Being sure Kiddo could understand in different places, with different people, at different times and with different tones.
  16. Demonstrating communicative intent. Me teaching Kiddo that he had to direct that ‘message’ to an actual person. Kiddo pulling me by the hand was not ok. Use a sign, gesture, glance, picture…whatever…but it must be directed towards me as a person.
  17. Immediate ‘natural’ or ‘praise’ reinforcement for any communicative attempts – a sign, a glance, picking up an object all got reinforced by getting and giving him what he was ‘asking’ for. Much later on we worked on saying ‘No’ to him requesting and teaching him that he cannot always get what he wants … but at this stage we were trying to get him to understand the POWER of COMMUNICATION.
  18. Language Regressions. I said to my hubby one day: ‘I will give you anything (ANYTHING) if you can get that Kiddo of mine to say the word “BALL” again’… hubby really tried on that project!
  19. Behavioural challenges. Sometimes these challenges would become headline news and forced us to prioritise other goals over communication.
  20. Sleep disturbance issues. Again – hard to work on anything when all three members of the family are sleep deprived zombies.
  21. A word, an actual word…in context…and directed as a message to the intended receiver. There were tears from me! The first time my son said ‘shoe’ (which was about his 4th word) it sounded like ‘Shoo’. He was holding his shoes and switching his gaze between the front door and me. I cried. He said a new word. He was 23 months old.
  22. Consistency. Structured teaching. Incidental Teaching. Trying to get him to use the word ‘Shoe’ again…and again…
  23. Prompt Levels and working with a Prompt Hierarchy. Then reducing the prompt levels over time. A therapist once said to me that one spontaneous word is ‘worth’ ten prompted words.
  24. By 2 yrs of age he had 6 words. I still remember them (Na=Banana, Ma=Mama, Dada, More, Car, and Shoe).
  25. By 2.5 yrs he had 50 words (that was the count of all words ever uttered by him…not all used on a consistent basis)…and yes I would write them down ….
  26. By 3.0 yrs it was 70 words. One (sometimes two) word utterances.
  27. By 3.5 yrs he moved to two word combinations (he now had over 400 words in his vocab). Echolalia kicked in too. I used envy parents who had this as an ‘issue’! But it was tricky phase.
  28. 4.0 yrs he moved to three to four word combinations.
  29. My son has just turned 5.0 yrs old. He can talk in short sentences regularly now. He has an abundance of words and concepts in his head. He can comment, protest, request and explain. He has a great little sense of humour. His receptive language is solid for his age. His expressive language is about 1 yr to 1.5 yrs behind his typical peers.
  30. The plan for the next phase is to work on his ability to respond to social questions. To assist him with his use of pronouns and his sentence structure. He also needs help (scaffolding) with using more expressive language in peer play settings.
  31. Ongoing maintenance and acquisition …a new skill has to be practised and generalised to remain, and the new skills have to be introduced and taught explicitly to keep him moving forward.

I was also motivated to document our communication journey in response to treatments and training that advertise ‘fast’ and ‘quick fix’ results (and sometimes with a big price tag). About every 9 months or so my son has a small ‘burst’ of development and moves along with his language. Apart from that it has been day by day, one building block at a time over many years with a team of professionals (and me and hubby) using evidence based strategies and keeping it enjoyable for us and Kiddo. 

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4 thoughts on “Communication: The journey thus far

  1. Thanks for this post – its so interesting to read. My journey with communication issues is different over 2 of my kids. My first developed a stutter after a head injury on top of delayed speech. WE tried to unsuccessfully get rid of the stutter for a year until i quit therapy and decided to reduce his stress in his life. But in the meantime his expressive, receptive and phonics in speech are really behind. My other boy is a foster boy who just only started talking due to ongoing issues related to his prematurity and he too had to learn that communication was a wonderful thing before he would attempt it. Such an exciting and difficult journey but so rewarding as well.

    • Thanks for sharing Joyce- keeping the learning enjoyable and relatively stress free is indeed a big part of the challenge. It’s a delicate balance for sure. Glad you were able to relate to our story – always lovely to know there are other mums who can relate to the struggles and the joys…

  2. I think your son’s communication journey echoes that of many. I know my child didn’t have words until around 32 months, but he too has continued to make gains. He’s almost 4 years old now and just moving into spontaneous 2-word phrases (most of his communicative speech is still single words and about 2 years behind age-level). And oh the echolalia, but you’re right. Looking back, I’d take the echolalia any day for the silence I heard just a year ago.

    Glad that your little boy has made such wonderful progress. The rewards are so much sweeter for the journey we travel. Thanks for sharing.

    • Thanks R.M. for the feedback. It was actually nice to ‘summarise’ the progress and know that the learning goes on. Yes, the rewards are so sweet – all the best to you and your little one too 🙂

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