The experience and testimony of a family serves as great insight into the support that we offer. HI HOPES has supported approximately 2000 families in our 1st decade, this number is increasing exponentially, as the awareness of the importance of Early Intervention is increasing, and as we extend into more provinces. These are the stories from both parents and interventionists’ perspectives of just some of our families. Pseudonyms have been used for confidentiality purposes. The stories have been shared from either the Home Interventionist’s or parent’s perspectives.
The first HI HOPES baby, Amy, was referred to us in September 2006 at three months of age.
“My daughter Amy was diagnosed shortly after birth with a hearing impairment and was fitted with hearing aids at three months. We were shocked, frightened and sad and had no idea who to turn to for support and help. We were put in touch with Claudine Storbeck at HI HOPES. What a journey it was for three years! We were given support and guidance, love, care and nurturing! We met amazing people from the Deaf community who showed us an insight into their world which made it easier for us to understand Amy’s.
HI HOPES gave us the tools to enable us to choose various forms of communication for Amy to learn both receptive and expressive language! We are now eight years into our journey with the most incredible and brave little girl who we delight in! I don’t know where we would have been without early intervention of HI HOPES. We will always be grateful and forever humbled by the work they do and the help and push they gave us to never give up hope and to always strive for great things! Thank You!”
Like Mbali, 29% of babies born deaf or hard of hearing have further developmental needs. Mbali was born prematurely at 27 weeks and weighed 800 grams and spent her first four months in ICU. Little Mbali was diagnosed with bilateral mild to moderate hearing loss and has worn her hearing aids full time since the age of one.
The family uses total communication to communicate with her and quickly developed a vocabulary of about 50 words and signs. In addition, Mbali was further diagnosed with cerebral palsy at 30 months after developing epileptic seizures. In spite of the challenges that she has faced in her early childhood years, Mbali is a happy little girl and delights in singing church hymns and nursery rhymes. She has learnt to speak in sentences that are clear and easy to understand.
Tia failed her first hearing screening test at two days old. She was referred for further testing, and her hearing loss was confirmed at six weeks of age. Both Tia’s parents are Deaf, but this did not make it any easier for them to accept Tia’s diagnosis and they went through the same emotions and struggles as hearing parents do; communication, amplification, education. What would be best for their precious daughter? Tia has an older sister who is hearing but who can also sign. The family uses South African Sign Language (SASL) as their first language.
Intervention from HI HOPES started when Tia was six weeks old. Tia started using a mixture of South African Sign Language, made up signs and gestures in order to communicate. An initial language delay was turned around to language seven months ahead of Tia’s chronological age after a year and a half of intervention.
Message of thanks to HI HOPES from Tia’s mother:
“Thank you to HI HOPES! You have changed our precious Tia’s life for a better future for her!”
Paige is the middle of three beautiful girls and there is no history of hearing loss on either side of the family. The cause of her hearing loss is unknown and she has no other developmental delays or medical problems.
Paige was born in London. OAE hearing screening was carried out at birth as part of the standard UK National Health Service system. She passed the screening and was not referred. The family suspected a hearing loss when Paige was 16 months and they took her to an ENT specialist who diagnosed middle ear infection and treated with antibiotics. At 21 months her hearing was tested as inconclusive and she had grommets inserted at 26 months. At 28 months it was again tested as inconclusive and was finally diagnosed at 30 months. By this time they had returned to SA and were under the care of a private audiologist.
Paige’s mom, was told about HI HOPES by a friend and contacted the programme through the HI HOPES website. Paige has a bilateral moderate sensorineural hearing loss. On meeting this family for the first time they were most welcoming and had many questions. They felt let down with the system and were desperate for information and support regarding choices for their child.
Interestingly this family were living in the UK at the time of initial testing and diagnosis, and even though they were part of a first world health care system, they felt they had been let down in terms of diagnosis and early intervention.
After the initial difficulties in accessing services for diagnosis and intervention, this family is very appreciative of the assistance provided by HI HOPES and very involved in Paige’s language development. Paige has started school and is doing very well.
Paige’s family have been so empowered through the support of HI HOPES, that they have been part of the active leadership of a parent support programme.
“I will not forget this amazing experience of bringing precious Mary into the world. Then the turning point, fear steadily gripped me over the next few months as doctors informed my husband and I that l had unknowingly contracted German Measles early in my pregnancy. As a result of this, our daughter was born with a cataract in her right eye, congenital heart defects, severe/profound hearing loss, as well as delayed physical development. To date, our daughter Mary has endured several heart procedures, an eye operation, countless medical examinations, and copes with wearing both spectacles and hearing aids… all before the age of two years!
My pain was personified in self-blame, the hours spent in waiting rooms on a weekly basis, the denial that this was not happening to my child. I remember the feelings of hopelessness, nothing in the world could have prepared me for this. Watching other babies learn to sit up on their own, crawl and mumble their first words while my little girl seemed to do nothing but lose weight. The frustration of not being able to communicate effectively, the lack of understanding or support of family members, the comments and judgment of strangers, it all just tore me apart emotionally.
In retrospect, my advice to any parent who finds themselves in a similar circumstance would be to come to terms with their situation as soon as possible. This will then enable you to start preparing for your new life of caring for your special and precious child and focusing on what is important for their growth and development. Acceptance of my situation made all the difference to my life. It was a key, much required ingredient for me to embark on the journey successfully as a mother. It equipped me with the strength and courage to accept that which was beyond my control. I daily grew to appreciate all the support and help that I received from HI HOPES. Through my renewed attitude I was able to see the beauty in life again.
During my journey a quote by Bob Marley resonated strongly with me, ‘You’ll never know how strong you are until being strong is your only choice.’”
Born 6 weeks premature, Bryce was prescribed Ototoxic drugs for an infection. His parents were not informed of possible side effects (hearing loss).
When Bryce was 4 months of age, his pediatrician referred him for a hearing test. The results showed that Bryce had a mild to moderate hearing loss in both ears. He was fitted with hearing aids and his audiologist referred the family to HI HOPES.
Our first priority was to establish a good relationship with the family, including the extended family. Bryce was the first grandchild and both the parents and the family was devastated by his deafness. No one on either side of the family had a hearing loss.
The HI HOPES interventionist started with ways to help the family come to terms with the loss of Bryce’s hearing, and support the parents emotionally. Once they accepted and understood the nature and implications of Bryce’s hearing difficulties, the family devoted themselves to his intervention.
The most important first step was to help them with getting Bryce to keep his hearing aids on so that he could maximize environmental sounds; Bryce proved most resistant! The HI HOPES modules about hearing aids, really assisted the family with this challenge.
Communication methods were discussed with the family. They were subsequently able to make informed choices, whilst following little Bryce’s unique needs.
A HI HOPES Deaf Mentor (DM) was introduced to the family. The DM acts as a role model for the Deaf child, whilst also exposing the parents to the Deaf world, by giving them the opportunity to ask questions about what it is like to be Deaf; about schooling and the work environment as a Deaf person.
The DM taught Bryce and his parents Sign Language, and now Bryce happily uses Sign Language alongside his oral communication skills. Bryce is doing really well and beginning to demonstrate the future possibilities of his intellectual and language potential as a result of the early input of the HI HOPES programme.
Tayla was born at 25 weeks, weighing only 585 grams, and spent the first four months of her life in an incubator.
She was diagnosed with a profound bilateral sensori-neural hearing loss at 2 months of age and amplification began at 6 months. However, Tayla was not wearing her hearing aids on a full-time basis. She found them uncomfortable and kept pulling them off. She was attending speech therapy on a weekly basis.
Tayla was referred to HI HOPES at 18 months of age. Our interventionist visited the family on a weekly basis, providing informational and emotional support to the family, as well as assistance with opening up communication between themselves and Tayla. A language assessment was carried out every 4 months to assess Tayla’s language development (both receptive and expressive language).
Topics covered by the interventionist in the home visits included:
- The three communication options (Spoken Language, Signed Language, SimComm) of which the family chose to use SimComm (signing and speaking);
- Hearing aids;
- Information on cochlear implants.
Tayla underwent surgery for a cochlear implant. She is responding well to the device and undergoes speech therapy twice a week.
Tayla used to get very excited when her Home Interventionist visited. She was always very receptive to gestures, signs, words and actions.
Tayla’s parents have worked hard towards her development and will continue to do so as they can see how Tayla is now responding and how her vocabulary is increasing on a daily basis.
Jordan was born through natural birth; her mom had no pregnancy or birth complications. But at 8 months of age, this little girl was diagnosed with a bilateral severe to profound hearing loss and possible Leopard Syndrome. She was referred to HI HOPES at 16 months, and after being in the programme for just under two years, she is now a successful HI HOPES graduate!
During the period of intervention, the interventionist spent time with the family discussing Jordan’s development and providing the family with support. Five language assessments were done over the intervention period.
This language assessment, known as the Language Development Scale (LDS), is used quarterly to monitor the language development (both receptive and expressive language) of infants and young children who are deaf or hard of hearing.
Eli lived in Makhazi Gav, a Rastafarian location in Philippi, Cape Town. As it is a Xhosa community his mother spoke English and his older sister spoke Xhosa and English.
He was diagnosed with a hearing loss after having Pneumococcal Meningitis, a bacterial infection that his mother had no knowledge about. As most parents, when they hear that their child has a challenge, they tend to blame themselves, so time was spent regularly dealing with various topics around grief, which the family found very helpful.
Because of his disability, he had very low muscle tone and their house was not conducive for him to crawl or play on the floor, mom would keep him on the bed most of the time.
Mom applied for the social grant and was happy that she received it and could buy food, clothes and fix the house for him to enjoy.
On arrival for a home visit, the interventionist found mom out of breath and unable to open the gate to let her in. The interventionist assisted in getting mom the necessary medical attention. She was admitted immediately and a week later she passed away. This was a shock to all who knew her and a worry who will care for Eli as the father was not around.
But God is faithful; mom’s brother and his wife were thinking of having another baby and took Eli. Immediately Eli was in a happy family, with other new siblings. Eli went for therapy to develop his low muscle tone and can now crawl on hands and knees. He speaks very loudly and loves to eat. He would stand at the gate and call the neighbours by their names when passing by.
Eli has transitioned out of the programme and now attending school. He has made so much progress and the guardians are pleased with the support from HI HOPES. We wish him well with his future.
“He who has a ‘why’ to live can bear almost anyhow.” – Friedrich Nietzsche
“I was 22 weeks pregnant when I went into labour with my twins. I was privileged to have had dedicated team of doctors and nurses who did everything possible to hold off the birth. I remained in hospital under strict bedrest for the following three week until our baby boy became engaged, necessitating an emergency C-section. There were two teams of surgeons and nurses in theatre that day, ready to start working on each baby as they were born.
My babies were born at 25 weeks gestation. Their birth weights were 880g and 740g proving that they are our true miracles. Although my son was not breathing on his own when he was born, he proved to be a tenacious little warrior. He was weaned off life-support after 9 days. Lisa, his (really little) sister was having issues of her own. She stopped breathing on her own after 10 days in NICU because she had a hole in her heart. A second tenacious little warrior emerged, she was weaned off life support after 4 days and she then went on to not only breathing on her own, but over the next two months she would also drink from a bottle despite a massive hole in her heart. Lisa underwent heart surgery at the age of 3 months, weighing a mere 2.4kg. The definition of feeling traumatised and helpless at the same time is being an NICU mummy to twins who experienced everything from lung infections, jaundice, low iron and apnoea attacks almost every 15 minutes – being twins they would take turns, as a consideration to their poor mummy and daddy’s hearts.
In August 2012, at 3 months of age, and a whopping 1.9kg our tenacious warrior # 1 came home. His little sister was released from hospital a month later, under instruction to be taken to immediately to Johannesburg to undergo heart surgery. Our tenacious warrior #2 (aka Twin 2) recovered after 10 days in hospital and only Panado to ease her pain. We felt we had dodged a hundred bullets the day we had them both home.
Tahir had failed his newborn hearing screening several times before we took him in for an ABR at 5 months of age. He was diagnosed with a profound hearing loss in both ears and he was fitted with hearing aids in both ears very shortly after his diagnosis. During that same period, he was also diagnosed with cerebral palsy – as we had noticed that he was not holding his head up and sitting up as his twin sister was. We are doing everything in our control to understand Tahir’s diagnosis and facilitate early developmental intervention. Sacrifices had to be made, I have changed my fulltime job to half-days. There were periods of time when we almost forgot that he was a deaf child, because we just needed him to drink his milk, as he struggled to gain weight…other challenges took the spot light. We attended regular audiology testing and speech therapy. Lisa started to sign with Makaton before she said her first words. I realised at once, that Tahir & Lisa were going to make a formidable team. While Lisa was chatting away in her own little language, Tahir did not verbalise at all, not even babbling. The decision to opt for a cochlear implant did not come easily – we researched, and sought advice from where-ever we could, and eventually he received his first implant. Although it was a bit traumatising – because he cried uncontrollably, I cried as well, but these were happy tears, when later that evening when he was rolling on his bed, cooing, testing out the sound of his voice and giggling when his Dad called him from behind! You could say that he’s adapted beautifully to having a cochlear implant and his new-found access to sound, he shows recognition to sounds and a few words and he responds and verbalises with babbling. We have a long way to go still, but the journey is full of phenomenal promise for both our tenacious little warriors.”
Rachael was diagnosed with profound hearing loss at the age of 18 months.
A HI HOPES early interventionist was assigned to support the family with weekly visits. On the Interventions’ (HI) first visit the whole family and neighbours were present to hear of how HI HOPES would support them. They were happy that will be taught how to communicate with Rachael. At the time Rachael communicated by pointing and using her finger to indicate what she wanted, and if was she was not happy, she’d get very frustrated
The family and neighbours looked forward to the home visits and participated in the session, and always had lots of questions. It was a very productive and helpful year of intervention, providing unbiased information and supporting the family. Rachael later had a Cochlear Implant, and is doing very well.
Carol’s mother contacted HI HOPES when, after a visit to an audiologist, it was discovered that Carol was experiencing a fluctuating mild conductive hearing loss caused by repeated middle ear infections. She suspected the hearing loss had been intermittently present for more than a year and at 21 months Carol was only using about 6 words. Her mother was very concerned about Carol’s speech and language development and asked for help from a HI HOPES Home Interventionist (HI).
The HI supported Carol’s mother through the process of contacting and visiting an ear, nose and throat specialist (ENT) who recommended that Carol receive grommets in both ears to stop the recurring middle ear infections from returning. Carol’s parents made the decision to go through with the procedure and during the waiting time the HI supported her mother in developing Carol’s language skills.
Carol’s receptive and expressive language skills were assessed using the SKI-HI Language Development Scale (LDS). This helped Carol’s mother to identify individual language skills that Carol needed to develop, and the HI supported her in identifying specific daily routines and techniques to target those skills.
After 3 support visits Carol underwent the grommets procedure and the family started their December holidays. The HI motivated Carol’s mother to continue using the techniques she started using to develop Carol’s language skills, as well as returning to the audiologist to make sure that Carol’s hearing has improved.
Carol’s mother is very appreciative of the support she received from HI HOPES and reports that Carol, who just turned two, is now using countless words. She is less frustrated and expresses herself much better. Together with the identification of the hearing loss by the audiologist and the medical intervention provided by the ENT, the support of the HI HOPES HI has made a huge difference in Carol’s and her family’s lives.
Lee was born in 2016. She was referral to HI HOPES by an Assessment Centre in March 2017.
Lee was diagnosed with Microtia on the right ear at birth and at 2 months of age with moderate to severe hearing loss (normal hearing via bone conduction) on the right ear and normal hearing on the left ear. Lee was initially not compliant with the use of the bone conductor but persistence proved fruitful.
She has been regularly for scans and appointments at Albert Luthuli hospital for skin grafts and consultations for procedures to correct the facial impairment. Her mom has opted for the oral route and Lee receives speech therapy at the Assessment centre at times.
Lee is cared for by her maternal grandmother as mom works. They live with an extended family. HI HOPES intervention is conducted fortnightly over the weekends so that mom is available which is challenging at times. An LDS was done and it was determined that Lee presented with a 2.5 month language delay. Goals were set together with the family to close the gap and get the best possible outcomes. Thereafter lessons from the sections of Early Oral through Audition and Aural –Oral were modelled with the family where they follow up with the activities during the next 2 weeks.
Lee’s vocabulary increases after each visit. The family is very happy with her progress although they understand she has a long road ahead of her, both with speech and medically.
Lee is now 17 months old and is extending her vocabulary and understanding. She is a very energetic and happy little girl and her visits are thoroughly enjoyed by Lee, her family and her HI. Visits will continue with the family until Lee turns 3.
Shevani is the first and only child in her family. She was born full-term with no pregnancy or birth complications. She passed her neonatal hearing screening in one ear and referred in the other ear, but did not have her recheck screening. Her parents became concerned about her development when she was about 18 months old, as her communication development did not seem to be on a par with her peers. Her hearing loss was identified at 23 months of age and she was fitted with bilateral hearing aids at 24 months of age. She has a moderately severe sensori-neural hearing loss in her right ear and moderate to moderately-severe sensori-neural hearing loss in the left ear.
Her family has been receiving support from HI HOPES Early Intervention Programme since September 2017. She attends weekly communication therapy and has made fantastic progress with her hearing aids and her parents’ amazing commitment and involvement in their daughter’s life.
The following lessons have been completed with the family:
- Two language development scales (LDS): Parental questionnaire to assess language skills for children who are Deaf or Hard of Hearing from infancy to 5 years of age.
- LittlEARS® Auditory Parental Questionnaire to evaluate age-appropriate auditory behaviour development, according to actual age and hearing age (i.e. time since hearing aid fitting)
- First Visits and Family Support:
- Topic 1: ‘Before you walk through their Door’
- Topic 5: The grieving process
- Chit-Chat Program DVD: Auditory-based programme aimed at caregivers to promote listening and spoken language. The parents have watched the Chit-Chat DVD. This has reinforced and added to the information that they received from their communication therapist/audiologist
- Earliest Interactions:
- Topic 10: Using an Experience Book
- Topic 11: Special Communication Challenges of Potty Training
- Topic 12: Special Communication Issues related to Discipline
- Aural-oral Language
- Topic 9: Encouraging the Child to Communicate Aurally-orally
- Challenging Behaviours
- Topic 1: Challenging Behaviours of Young Children Who are Deaf and Hard of Hearing
- Topic 2- Strategies for improving Behaviour outcomes for children with challenging behaviours.
Shevani’s initial language developmental scale showed that she had a 5 ½ month language delay and her most recent LDS completed showed that many language skills were developing or emerging with an emerging language delay of 2 ½ months.
Visits to the family will end at the end of March 2018, when Shevani turns 3 years old. Her parents work hard to make sure that they provide input for Shevani that is a fun learning experience and meets her spunky, spirited nature. Their commitment will stand Shevani in good stead and assist her to reach her full potential as she gets older and faces new challenges and adventures.
Buhle lives in Tembisa with her family. She was a normal delivery at full term. As an infant, her family were concerned about her being so quiet; she was not babbling or cooing or making the sounds that young babies typically make. At 12 months old, her mother took her to a nearby hospital for an assessment. It took six months to confirm a diagnosis of a profound bilateral hearing loss.
She was fitted with hearing aids bilaterally over the next six months.
She was referred to HI HOPES at the age of 36 months. The family had no idea where to start with raising a deaf child, begin communicating & interacting with her and also needed help understanding how hearing aids worked. Lessons where done to help the family understand hearing loss, language and hearing aids. Topic`s where done on modes of communication and the family choose what worked for them.
The family learned ways to communicate with her using Signing & talking (Sim Com) as they were interested in Sign language. She was beginning to sign, express her needs overall, and interact with the family. Everyone was happy at home. They were proud signers & can converse with her.
Her audiology team felt that she was not getting sufficient benefit from her hearing aids and placed her on the Cochlear Implant list. The next while proved a difficult decision-making time, as the family faced a number of difficult choice options which included the communication methodology debate coupled with new possible access to sound.
Grappling with decisions, encountering bias and limited choice is often something experienced by families. Buhle’s family truly appreciated the unbiased support from HI HOPES, both emotionally and in terms of unbiased information sharing. They were delighted with their new ability to communicate with their child and thankful to HI HOPES for the free services.