Many of you have asked over the last months how our little deaf girl and we as a family are coping with her situation (thank you so much for your concern!) – so I decided to share here some of our way since last summer.
Learning how to express joy, gratitude, fear, hunger, boredom or anger without words; finding ways of communication in silence; figuring out how to catch someone’s attention without using sound – these are the tasks we have to learn with our little girl, because even wearing now excellent hearing aids, alhamdulillah, she still is and stays a deaf person with only little perception of sound.
To realize and accept this was hurtful and hard. Mashallah.
But alhamdulillah, our daughter is not totally deaf and some sound reaches her consciousness quite well. She doesn’t live in silence and is herself not silent at all, she babbles and chatters the whole day, subhanallah, she tells things that sound like nonsense to us but mean a lot to her. She uses the tones of her voice quite well and suitable to different situations, but there are some sounds she can’t observe and some letters she doesn’t get at all. She maybe gets about a third of what is said, so for example if you would say to her “salam aleikoum” she would maybe understand something like “aam aoum”.
Especially my voice she nearly doesn’t hear. And although a mother and her child feel a lot of things naturally and are, alhamdulillah, connected in intuitive ways, we need now skills to make conversation easier and deeper between us.
I’ve read a lot of books, websites and articles over the last year and I have spoken to a many people about the deaf world, about hearing impaired, about how to live with them, about possibilities on how to make a good living for our child and on how to support her best.
There are many different opinions and some are really contradictory and very black and white.
So in the end things are totally up to us and depend on what we want and wish for our girl, what values we have and what we think would be best in our specific situation.
And because we live far away from modern achievements and the latest scientific knowledge, we are (nearly) not influenced nor manipulated by trends and fashions (that sometimes do not prove themselves or change too quickly). This provides us with a kind of freedom and independence that I really value and count as a blessing, alhamdulillah.
For us it is clear now, that we want to raise our daughter bilingual, I mean not bilingual in Berber and German, but I mean in oral language and also in sign language; so we try to sign and to talk to her in the same time.
We want to hold open both doors for her, the door to the deaf world, but also that to the hearing one, so that she can live in both worlds and choose her own way with as less boundaries as possible, inchaallah.
We do not want to decide for her something as critical as a cochlear implant until she can decide herself, and we do not want to force her into something so difficult and hard to learn for her as the communication only by hearing and talking, always depending on lip reading and the functioning of the hearing aid.
We see how much she likes signing already and how quickly and with how much joy she learns it, trying at the same time to pronounce the words.
We want to open her as much of the horizon as possible and we want to give her the ability to communicate, to express and to get in contact with others in multiple ways. We also want her to meet other deaf people to relate to, young and older ones.
Living far away in the midst of the remote Atlas Mountains, we are free in our choice but need to do some effort to realize these aims.
With no doctors around, no help for hearing impaired people, no knowledge of sign language, with neither speech trainers nor special needs therapists near, we either need to drive to Marrakech (5 hours away) for support and treatment, or we need to establish something here by ourselves.
So we decided to tackle the situation and to try to turn it into something beneficial, with Allah’s will:
Through beautiful incidences, maktoob I would say, and by the help of very nice people we got in contact with other deaf persons and people who are proficient in sign language. Some already visited us and gave us wonderful first aid on our way into signing, and the meetings with these lovely people from Belgium and the United Kingdom were a gift for our daughter and motivated us to look now for people who come for longer periods to train us in sign language, but also to be a role model for her and to help us on the long run to establish a special needs department in our little school.
Our daughter is not the only one, there are other deaf children in this valley and our wish is now to bring them together and to provide for them a nourishing environment of possibilities to learn and to grow, inchaallah.
Within the bounds of the “école vivante” we want to give those children the possibility to have access to education according to their needs but integrated in a regular school.
The way is long and we are just in the beginning. There are many things to be considered, to be organized and a lot of knowledge to be sought. But we are feeling very positive and hopeful about it, alhamdulillah.
Over the next months several volunteers will come, God willingly, to help us establishing ways of communication with our daughter and to develop a local sign language with her and a few other deaf kids from here.
In small steps we aim to create a little centre for hearing impaired people and eventually also for other children with special needs, inchallah, integrated in our school.
If you are interested in supporting or participating in this special needs project of the “école vivante”, if you know someone who would like to, or if you want to support the school, please leave a comment or get in contact through: info(at)ecolevivante.com
You can also donate online to our French circle of friends, to support us financially.
Thank you for keeping us in your dua’ !
Assalamou aleikoum oua rahmatullahi oua barakatuh.