Conor’s Fight to find his Voice.
I think one of the absolute hardest parts about Autism for me as a Mum is not hearing my children speak, not hearing their voices, not hearing the “I love you”s I so want to hear. That is by far the hardest part. The thought that Conor and now Jack have all these thoughts inside their heads and they can’t “express” them, breaks my heart.
Over the years we have tried everything to help Conor, we have driven around the country bringing him to Speech Therapists, tried all the ways you can imagine and it just didn’t work. Over the Summer a very close friend of mine told me about an amazing Speech Therapist she had brought her beautiful little girl to. She had helped her little girl find her voice again. Her little lady was almost the same age as Conor so I knew how she felt for all those years wishing her little girl could speak, and now she was starting to!
She passed me the Speech Therapist’s number that her little lady went to and I arranged an appointment. It was by far the best thing I have ever done for Conor. Every week since that fateful day I made that first phone call, Conor goes to Speech Therapy to his amazing Speech Therapist Roisin in the Speech Centre in Castlebar and every week he makes more progress.
I think sometimes it is timing/fate that intervenes and then magic happens. It has been years upon years since Conor last spoke and said “Mama” when he was a baby.Gosh even writing that a lump starts in my throat,but this is a happy post so no tears. Sometimes no matter how brilliant the Speech Therapist your child may just not be “ready” to learn to speak again. I have found that to be true for Conor.
After his first appointment with Roisin, I knew. This time it was different, they had a connection, he warmed to her straight away and she “got” him after just a few minutes. She knows him so well now and he adores her. At his most recent appointment he was even trying to hug her! In the past Conor would be trying to get out of the room away from his Therapists, but not this time. He looks forward to going every week.
Since starting with Roisin he is doing his best to talk,making sounds, imitating, learning to use Sign Language, learning to progress with his PECs communication. He is learning to have a “voice” in his own way and that it is thanks to Roisin for helping Conor to find his way back.x He has a long way to go yet but I am happy and thankful for every step closer he can make to communicate with us again.x
Every week we get “homework” to work on with Conor and we carry out his work almost every evening and during the day when the opportunity arises we put into practice what we have learned. I get asked a lot about what Conor is learning at Speech Therapy so I decided to put together a short post about some of the activities we are doing at home and at speech therapy, together with some links to useful resources that I use myself from time to time to help Conor.
Speech Therapy Activities/Resources –
I think the first thing to always have to hand when trying to teach/help your child learn, is to have “Motivators”. Motivators are any thing at all that would encourage your child to “work”/”try” and activity and their reward would be to have access to what they really love/want.
In Conor’s case we use his Ipad and differing games (such as the Crocodile Dentist game)he loves to play for his “Motivation” to work hard.
Before he starts his “work” he gets to choose from a “Choice Board” what Reward/Motivator he would like to have if he completes his work.
We then use an “I am working for” Star system, for each activity he completes he collects a Star. When he has collected all 5 he gets his chosen Reward/Motivation.
At first we make it easier for him to collect his 5 stars so he gets used to the idea of how he gains access to what he wants through his participation, then once he has grasped the idea we make him work harder to get his stars. The long term plan would be that as he matures he won’t need the motivators and will work independently.
I have already created free downloads of the Choice Board and Star System Board and you can find them here.
Every day we carry out different Speech Therapy Activities with Conor to help his understand of actual Language. It is an approach created by Alison Bryan, aimed to help children develop their understanding of Grammar by linking the structure (Syntax) of a sentence with it’s meaning (Semantic)
We use Colourful Semantics everyday at home and in his therapy sessions with Roisin. You can find out more about Colourful Semantics yourself here and download their many free resources and information.x
Picture Exchange Communication (PECS)
We use PECS everyday at home and at school for Conor. It can be so easy to fall behind in pushing Conor to independently use his PECS Communication Book and I find at times I have to remind myself to make him get his “pictures” to ask for what he wants etc. It is brilliant to have Roisin to guide us now every week and to encourage Conor (and us) to stay motivated in using the PECS as another form of Communication for Conor.
Most children with Autism find that Visuals (pictures) really help them to understand their world around them so it makes sense to use as many as we can to help Conor and now Jack. You can create Visual Schedules of what is happening each day, explain social situations/events through “Social (Visual) stories” which help your child to understand what is happening in their life and so on.
This week Conor has moved on to “I see” and is moving on from “I want”. We are encouraging him to tell us what he “sees” through fun playful games. This will help him understand he can tell us more than just what he wants to eat or drink or do. The long term plan is that eventually he will be able to express himself fully through the use of the PECS system.
I try as much as I can to always have PECS visuals ready when working with Conor so he can better understand and participate.
You can find out more about PECS, their products and their upcoming training courses here. For anyone who is local to Galway they have an upcoming PECS Training Workshop in November 2016 that I plan to also attend. As I have two little boys who both are non-verbal it will be well worth going to the training and brushing up on my skills. The more I know, the more I can help my gorgeous boys.x
Carrie Clark is an American Speech and Language Therapist that I learned about from Roisin. She offers various free online resources, information and downloads to help Parents and Therapists. I use a lot of her downloads with Conor after watching how Roisin uses them in her therapy sessions with Conor.
Through Carrie’s resources Conor is learning about following instructions, imitating, and learning to use First, next, then. She has a host of free online resources. You can find out more about Carrie and download her resources here.x
Roisin is the first Therapist/Person who was ever able to encourage and teach Conor how to make sounds! Before going to Roisin he couldn’t connect the fact that he could actually make sounds himself and that we would understand. Roisin advised me from the outset to imitate everything Conor says to me and continue to do so. Conor’s face lit up when he realized that we could “understand” him and he would “talk” in his own way to us and I would repeat back what he would “say”. Then it was Conor’s turn to try and make a sound like I was making. He finally understood that I could copy him and he could copy me! In the long term it will teach Conor many things one of which is that he can communicate and he can mimic language that we all use.
It will be a long drawn out process and require heaps of patience and persistence. But keep at it, because when you see the realization light up their little faces that you understand them, it will be worth every hour of every day you spend helping them learn to speak.
Now we practice our sounds everyday and Conor will come up to me and make sounds, wanting me to copy him back. As Conor is learning his Jolly Phonics with his lovely Teacher Noelle in Knockrooskey National School we also refer to the way in which Jolly Phonics teach children to learn their sounds. We incorporate his Speech Therapy resources and his Jolly Phonics resources when encouraging Conor to make sounds.
Every week I see progress in Conor since he started in Roisin. He picks up what she is trying to teach him so easily that sometimes it is unfathomable to me that he can’t yet “speak” but therein is the mystery and heartbreak of Autism. I keep thinking someday soon I’l hear him, and I hang on to that hope as ardently as I can because the possible reality is unbearable.x
If you are a parent of a child with Special Needs, just know you are doing the best you can and please don’t feel as though you could be doing more.x We are all only human, do the best you can right now and know that is enough.xx
Here is to hoping and wishing we all hear our children’s voices someday soon.xx
Pop over to our Facebook page which I update daily (when my gorgeous little puddins are feeling well- they have the Chicken Pox at the moment… nightmare lol!) x
All my love, Amandaxx