We could not, in good conscience, let our children go without speech therapy, so when we eventually heard that there was funding available through the UpsideDowns Education Trust, we were so relieved. Leo and Tiffany needed to be given the best shot at being good communicators, which we see as being the ticket to future jobs, friendships, relationships and being involved citizens.
It was simple, considering the years we had battled to get services for our children.
We applied to the Trust and were accepted, and found an approved, registered speech therapist who had experience with children with Down syndrome. We hit the jackpot.
Over the past seven years we have had three experienced, qualified, creative private speech therapists work with our children. Each has brought their own unique set of talents and assisted Leo and Tiffany in various ways. They have visited us and provided therapy to our children together and individually. They have worked with our children at home, at their babysitter’s home, at their early childhood centre and at their schools. Some have travelled quite some distance to work with our family and we have also travelled long distances to meet with these professionals who hold a place dear in our hearts.
Some of the therapists have emphasised speech production, others have emphasised holistic communication, using sign language and communication with symbols and speech. And currently, our beloved speech therapist is helping our children to use their augmentative speech devices: iPads with speech programmes that allow the children to clarify what they are trying to say with the help of electronic assistance.
We could not have had this essential education for our children without the help from UpsideDowns.
And it’s working! Leo is now reading out loud to us and Tiffany has become a chatterbox. She is speaking in complete sentences and we are able to understand more and more of what she says. We are delighted.
Parents now have much higher expectations for children with Down syndrome. We expect they will learn throughout their lives, long into their adult years. We expect them to live as independently as possible, to work and earn money in meaningful jobs and to have friendships and meaningful relationships – maybe even marriage. We expect them to contribute to their communities.
With these expectations, we have a commitment to contribute to their education, to their world view and their sense of justice and of community. We have to do our part. Ensuring they have ongoing opportunities to improve their communication skills and their speech is something we owe our children. With the help of UpsideDowns, we have been able to hold up our end of the bargain.
And for this we are very, very grateful.
Gretchen Good is Mum to Leo and Tiffany. She is a Senior Lecturer in Health Sciences at Massey University. Images kindly supplied.
The UpsideDowns Education Trust is a One Percent Collective partner charity helping give kids like Leo and Tiffany a voice.
One Percent Collective have partnered with 14 Kiwi-based charities. Give regularly to as many as you like with one easy payment set-up. One Percent Collective don’t take a cut. The charities get 100%.
Find out more about UpsideDowns and One Percent Collective at oneperentcollective.org.
