This blog comes after much procastination. Why? because it’s a huge topic and one that I am sure I will have to continue in some follow ups.
I was somewhat in denial and didn’t understand the extent of the great difficulties most children with T21 experience with speech and communication. I had met and briefly worked with a five year old child with T21 at the A.R.R.O.W. Centre who had just 3 or 4 spoken words and I assumed that he was the exception and no way was any child of mine going to have such limited speech at that age! I have been taken off my high horse since then and have learned to steadily work on this and accept the small slow progress.
The most difficult fact for me to digest is that JB has uttered words with perfection, but then somehow lost the ability to repeat them. So by the time I realised I needed some help in this vast and complicated area, JB was already 16 months old.
I will outline in chronological order what intervention he has had since then. Before I do, I would like to mention something crucial that I learned during this time; speech acquisition and language acquisition needs to be addressed as a whole, so understanding becomes a central part as the child grows and learns. This is all an extremely complex process and exposing our children to a variety of healthy environments with clear commentary is key to growth and communication.
From Birth – Books , books, books!!, self-voice recordings, rhymns and songs.
16 months – 1st Speech Therapist (3 months) I wasn’t entirely convinced with the effectiveness of her approach.
– Face to face speaking
– 2nd Speech Therapist (4 months) She was good and she gave me some *exercises to do at home with JB, after a while she seemed to run out of ideas and she was quite expensive.
* – face massage, inner mouth stimulation using biting implement and NUK brush. Blowing horns and harmonica.
– face pulling and imitations, immitation of sounds, sign language
– turn taking , lip smacking
– increasing listening skills using as well as Self-Voice, music, specifically Vivaldi Winter, from the Four Seasons, Vivaldi Violin Concerto with two Violins and Strings in A and Guitar Concerto in C Major. These have been a valuable addition to JB’s life, he loves loves this music as well as other classical and loves to ‘play’ his guitar. These were recommended from another organisation that branched off from the Institutes of the Development of Human Potential.
– 3rd Speech Therapist (1 month) She was excellent but was brief because JB and I had to move to another area. She made me aware of the difference that a state paid professional gives their all, all knowlege, all time, all dilligence, all caring to her client. She helped me to understand that skills such as concentration are prerequisites to speech and so all areas of development need addressing for the child, not just focusing on the speech entirely. She was wonderful!
– 4th Speech Therapist (1 year and ongoing). Again, this woman is excellent. She doesn’t pretend to know it all and is dilligent, positive and thorough. She visits JB at his nursery and instructs the staff there what he needs and follows up with one to one sessions with him as well. She is clearly addressing development in many areas as well as speech sounds and overall communication.
SPEECH, I have learned during the last few years as complex as it is, requires a holistic approach including the speech focused therapies. Education and life skills are equally important so that when the speech does finally come, it can fit neatly into whatever he is doing in other areas without having to address all areas practically from scratch. Thinking, awareness and understanding as well as gross and fine motor skills all play an equal part.
A Breakdown
Here is what I have learned are essential:
talking in clear speech.
no T.V.
work on concentration
the Self-Voice
taking turns using games, gestures and sounds
praise with big cheers and claps
practice words by demonstrating words broken down into syllables
exaggerate facial sound expressions to imitate
feed the brain with good nutrition
exercise regularly to get oxygen into the brain and stimulate other brain pathways
repeat words while playing games and playing in general
set the example
sing and/or play songs repeatedly
pair movement with music
have fun and pace yourself
…and more recently, 1) discovering other brain stimulation exercises such as walking up three steps, one foot per step, then down again without holding on, progressing to having eyes covered as he does this. 2) spinning slowly anti-clockwise on a swivel chair…...
... and perhaps most importantly, ADDRESSING POOR SLEEP FROM THE INABILITY TO BREATHE PROPERLY!
SOME BOOKS I RECOMMEND:
Early Communication Skills for Children with Down Syndrome by Libby Kuman. (There is alot of information in this book, but somehow too much and no explanations of why)
Fit Baby, Smart Baby, Your Baby! by Doman Take from this what you can. I love this book, but go with what your child enjoys doing and don’t be hard on yourself.
What to do About your Brain Injured Child by Doman Again take what you can. I realised that this was too much for me to do alone and the Institutes also recommend these strategies to be used fully with full family support. I nearly burnt myself out on this one.
Kids Beyond Limits by Anat Baniel Another book I loved. I use many simple everyday techniques from this one that I believe made a noticeable difference.
Montessori – The Science Behind the Genius by Angeline Stoll Lillard. A well explained book about the Montessori techniques with strong research evidence.
How to Teach Your Baby to Read by Doman A useful approach and one that I found helped JB to learn more words as he repeated the words when I read them out.
Is That My Child? by Robin Pauc Good information on diet and what a difference it makes to the developing child.
The Brain that Changes Itself by Norman Doidge A fantastic insight on how plastic the brain is and gives hope to anyone.
TO DATE…
..I will continue to follow up on ths topic as time goes on. To date JB has about 25-30 some clearly, some not so clearly spoken words in context. He can imitate many more and this is a repetitive ongoing work that he actually loves to do. He LOVES TO SPEAK, and this is great for both of us as we have daily word sessions using his word books as well as other objects and body parts.
If you want more feedback on the books I have recommended here, please let me know. These are just a few, I will give further recommendations as I continue.
Thanks for reading and I hope this is useful.
Best, Cornelia xx