Written by Tania Charlton.
Tania is a trustee of the charity 'Wouldn't Change a Thing'. Full credit for this post goes to Tania and Wouldn't Change a Thing.
October 2020 - Down Syndrome Awareness Month
Henry
I am a parent to a beautiful little boy called Henry. Henry has a speech delay associated with his genetics. Henry has Down syndrome.
From the minute I brought my son home from the hospital I researched constantly about how to support his development and give him the best possible foundation for his future. Having decided not to give him a dummy prior to his birth, I soon went back on my decision and spent some weeks holding a dummy in my son’s mouth to support development of his oral muscles, the feeling of elation when he could hold it him himself was quite something.
Henry couldn’t drink well from a bottle, over half of every bottled leaked out the sides of his mouth and feeds took hours because he was so weak orally. I bought a straw cup recommended for him from overseas and at around 7 months old I watched him learn to suck from a straw. I discovered I should avoid Tommy Tippee cups at all cost, as they were known to encourage tongue protrusion.
I discovered very quickly how important feeding, chunks, placement and flavours were for my son when weening stage commenced. Due to severe reflux and milk being so challenging we began weening at 17 weeks. Henry adored food from his very first taste, I mixed his diet with purees and proper dinners, by 7 months, he would polish off a roast dinner by hand. At this stage I really wanted the input of a SALT, wanted to make sure what I was doing was right, to ensure we were on the right path. I recall several conversations with our therapist where I was told: ‘we don’t really see them until they are two.’ ‘Really unless they are trying to talk there is no need’. I was confused and determined and had a meeting to see that speech and language therapist where she watched my child eat something and told me all was good and to come back when he was trying to talk.
At two years old we were finally allocated a speech and language therapist for regular check ins. I was shown the speech therapy pyramid and told we needed to first work on attention and listening. How strange, firstly because he was two, but secondly because I had researched that for children with Down syndrome speech sounds were the most important starting foundation because comprehension, as well as attention and listening could take some time to establish for our children. Yet over the next few years, every therapist would refer me back to the pyramid, we had the same forms of therapy under several different therapists for 2 years, except one exceptional lady within the mix. We had no sounds therapy apart from a few weeks with one wonderful therapist at 4 years old, until we were moved onto the next.
As my son’s speech developed, his vocabulary improved and his 2,3,4 word level understanding, however nobody could understand him apart from me and his sister, because his speech sounds were so poor. Added to this Henry had moderate to severe glue ear impacted hearing loss, yet we were not offered hearing aids until 4 and a half years of age. Having attended a specialist training session for early years of development for children with Down syndrome, I was informed that if children with Down syndrome do not have aids to support their hearing before two years old their speech would be impacted for the rest of their life. I fear this is my son. We now have speech sound therapy for my son, I had to fight with such determination to get this for him, we see improvements but it’s very hard to unlearn and relearn a sound, especially for a child who already has so much to process.
The ’textbook’ let us down as a family, I believe many therapies and interventions I put in early on have enabled Henry’s speech to develop well, however, I am no speech therapist, I am merely a parent trying to do the best for my child.
The speech therapy pyramid does not work for children with Down syndrome yet, there are many interventions and considerations that do. I feel sad I didn’t understand and feel confident enough earlier in his life to push for more therapies and support for the level of that pyramid that he needed at the right time for him. After so many dealings with therapists referring me to the textbook pyramid I would worry of the future therapies for children that need a different path, an individual path to not only support their speech, but their confidence, friendships, education and communication.
Tania with her beautiful family
'Wouldn't Change A Thing' also have blog on their website, where you can read more about Down Syndrome Awareness. Take a look here: https://www.wouldntchangeathing.org