What is the point of life if your child doesn’t want to hug you?
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Four years ago Michelle McKeever and her husband Paul felt like prisoners in their own home as they tried to cope with their then three-year-old son who had been diagnosed with autism.
“Ronan was completely nonverbal, not toilet-trained. Anytime we went outside the house, Ronan would have a complete meltdown – he could not cope with the sensory overload.”
At home in Crossmaglen, Co Armagh, he showed no affection. As a parent, says Michelle, if your child is completely closed off, “it is soul destroying. What is the point of life if your child doesn’t want to kiss you or hug you?”
I am not going to say negativity but not a lot of hope – that was so frustrating
They sensed Ronan had issues since he was about five months old. Yet for two years before diagnosis, they had no services or supports and felt in limbo. After the diagnosis, she kept asking professionals what she could do to improve Ronan’s life.
“I got a lot of head shakes; I am not going to say negativity but not a lot of hope – that was so frustrating.”
What changed all that was hearing about the aptly named Family Hope Center (FHC), which is based in Philadelphia. A reflexologist who Michelle was attending had seen a newspaper advert for a seminar in Dublin and wondered if it would be of any interest to her.
Michelle, a former quantity surveyor, went along and “was blown away” by what she heard. Listening to an explanation of the different areas of the brain, their functions and how stimulating damaged pathways could lead to improvements, she was intrigued and signed up for a three-day parent-training programme that the FHC’s team returned to do later in the year.
During that training, which covers a wide spectrum of brain development difficulties, Michelle was able to take away what she believed applied to Ronan and how to progress with him. They were so happy with the improvements they saw in him, “we got greedy and wanted more”, she says.
The next stage was to commit to a six-month programme, starting with a two-day assessment by the center’s multidisciplinary team – incorporating education, nutrition, physical, sensory, respiratory and social development – to devise an individualised plan. This is supported with ongoing, unlimited access to the center through phone or online.
Michelle McKeever with Ronan, her husband Paul and their older son Ryan. Photograph: Rashida Keenan
“Why I went to Family Hope was because it made so much sense; it educated me how to cope with the child but also to try to help him,” says Michelle. “So it wasn’t just coping mechanisms to keep him the way he was but ways to stimulate him and bring him to the best of his ability.”
Asked to give an example of something that made a significant impact, she singles out working on Ronan’s sense of smells. Tests had shown he had no sense of smell and that is closely linked to the part of the brain that processes emotion and memory.
She started to encourage her son to sniff things: salmon, broccoli, lavender, cloves, honey – whatever she had to hand. He seemed to start to develop a sense of smell and engaged more with the process as a result.
For her, it was proof of the key element of the center’s programme, that the more you stimulate an affected part of the brain, the more function you will get. And in Ronan’s case it was also promoting social and emotional growth.
“His eye contact became more, he was showing affection, he starting speaking – all these things came naturally just by giving him a couple of smells, every day, five times a day.”
There are no words, she adds, to express the gratitude they feel
Being one of only about 18 families in Ireland that the FHC says it is working with, Michelle says it is hard when you are doing what nobody else is au fait with. She knows it is easy for people to mock but stresses that her family is doing it because they are getting results.
It’s a team effort, with her husband and older son Ryan (19), who “because they can see progress they are mad to help”, she says.
After four years on the programme, “Ronan is toilet-trained; we have no problem going anywhere – we can fly at this stage”. There are no words, she adds, to express the gratitude they feel “for getting our lives back – I don’t know how long term we would have survived, as a family or as a relationship, with that sort of pressure”.
Law of brain development
Family Hope Center director Matthew Newell acknowledges it might seem “really weird” that it has so much expertise on so many varieties of children with neurological difficulties, including those with autism, Down syndrome, epilepsy and cerebral palsy. But “we follow the law of brain development”, he says.
Their approach can be summed up as identifying the specific area of the brain that co-relates to a symptom and looking at how they can work on it, as opposed to just managing the symptom, he explains from Denmark.
He and his team were spending a month there working with 80 children, ahead of their next visit to Ireland to host a three-day training course in Kilkenny in September. Consisting of sessions lasting a total of 30 hours, it costs €960 and is aimed at families, doctors, therapists and anybody who has an interest in neurodevelopment, he says.
If they want to proceed to a two-day assessment for an individualised plan and six-month programme, the cost is €4,860
Parents can go home from that course with a basic plan for their child but, if they want to proceed to a two-day assessment for an individualised plan and six-month programme, the cost is €4,860. Twice that for a year, including repeat assessment.
The center’s focus is not on the labelling of special needs children through diagnoses but rather on what part of their brain was affected, be it before, during or after birth.
“We explain our well kids by what they can do and we explain our hurt kids by what they can’t do – and they get stuck there,” says Newell. The center wants to inform parents how they can take an active role in supporting their child’s neurological development.
In looking at the entire brain and its seven principal domains, it is possible to map where the functions should be and therefore to understand the source of a child’s malfunction, says Newell. “Then we know where to start trying healing, supporting, developing, maturing and promoting the pathways.”
Well kids develop in stages – they crawl on their bellies and then they creep on their hands and knees, then they walk and then they run. In children with developmental delays, a pathway has been blocked so you have to “reinforce where the stopping was – not where you want him to be, you have to start where he is”, says Newell. That means going back to the appropriate developmental stage.
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Take a child who is two years behind in reading, writing and arithmetic and struggles with daily homework. He doesn’t seem to be able to focus. The developmental stage of belly crawling helps to organise a particular part of the brain that creates motivation and focus. Get that child to crawl 100 yards on the floor every day for 100 days and all of a sudden he starts to focus in school, says Newell.
The center co-ordinates its results, using a standard assessment tool for paediatric rehabilitation, WeeFIM, “to show we’re ethical, we’re fair and we prove to the world that this works”. Newell attributes the apparent success of the center’s programmes – “300 per cent above the national average” – because they focus on the child’s neurological difficulties and empower the parents.
“We want a more symbiotic relationship than a co-dependent relationship – I will give as much information as I can about the brain and you tell me about your child.”
The Newells both worked in Delacato and Doman’s Institutes for the Achievement of Human Potential in Philadelphia for 20 years
Newell and his co-director, his wife Carol, were inspired by the work of the late educationalist Carl Delacato and the physical therapist Glenn Doman. The Newells both worked in Delacato and Doman’s Institutes for the Achievement of Human Potential in Philadelphia for 20 years before leaving to set up the Family Hope Center 15 years ago.
The American Academy of Paediatrics has described treatment programmes that offer Doman Delacato Patterning Therapy (DDPT) as “unfounded”. It said “they are based on oversimplified theories, are claimed to be effective for a variety of unrelated conditions, and are supported by case reports or anecdotal data and not by carefully designed research studies. In most cases, improvements observed in patients undergoing this method of treatment can be accounted for based on growth and development, the intensive practice of certain isolated skills, or the non-specific effects of intensive stimulation.”
However, when this is put to Newell, he says: “We don’t follow those protocols at all. We are an evidence-based practice.” The FHC website states that evidence-based practice “is not a list of empirically proven treatments. Instead, it is a framework from which clinicians use multiple factors (research being foremost) to decide on a treatment course”.
Orla Hardiman, consultant neurologist and professor of neurology at Trinity College, Dublin, says there is validity to the idea that the brain is more “plastic” than once thought and that it can be adjusted and modulated. Protective strategies against later-life dementia, she points out, are based on that concept – that the brain is like a muscle, if you exercise it, you improve it.
Her concern is that in the case of some childhood disabilities, “there are structural changes in the brain that are not really amenable to that. While there is evidence that intensive support to children with disabilities can maximise what they have, it can’t actually generate what they don’t have.”
The evidence for continued professional intervention after a person has ‘plateaued’ is not very good
Prof Hardiman says the only way to demonstrate the effectiveness of any given treatment programme is to do a randomised, controlled trial. Personal testimonials can be very compelling but she would be sceptical and advises caution around any treatment that has not undergone such a trial.
She acknowledges that for any condition, a multidisciplinary approach improves outcomes. “We do have multidisciplinary teams in Ireland but we don’t have the resources to do intensive therapies.” However, she says, the evidence for continued professional intervention after a person has “plateaued” is not very good.
To parents considering pursuing alternative programmes, she would say “caveat emptor”; look for “before and after evidence that validates it scientifically” and discuss what is being offered with expert therapists in local services to find out how it differs from what’s already available.
Lorraine Dempsey, chairperson of the Special Needs Parents’ Association, also urges caution over paying out large sums of money for therapies. While stressing that she is not referring to the Family Hope Center, there is a tendency, she points out, for people to be more committed to programmes they have decided to invest in, rather than ones that are available for free.
“Any input into a child, if done on a regular basis, is also likely to provide good results but we tend not to, if not directly paying for it.
I just felt I wasn’t doing anything for them. I was disappointed in my own abilities.
“When spending a significant amount of money, you have to take a critical step back and ask yourself, if I was carrying out the therapy programme that I get, albeit not very often, from the HSE, at home on a daily basis, would I see the same results?”
Catriona O’Hanlon has been a special needs teacher for 17 years, and currently works with children with severe difficulties at St Patrick’s School in Enniscorthy, Co Wexford.
“I just felt I wasn’t doing anything for them. I was disappointed in my own abilities.” When she stumbled across the FHC and went to an introductory four-hour seminar held here, some of the children she had taught “were popping into my head”. She was so fired up by what she heard, she persuaded the principal to let her attend the three-day training programme last year.
O’Hanlon has since incorporated elements into her work over the past school year; some techniques she did with the class of six on a group basis, others one-on-one.
Her personality is also evolving, she is interactive and starting to verbalise
“I had to do the curriculum still and it was tough to weave the two in together but I have successfully done it in different areas. A lot more work needs to be done now to perfect it.”
She explained to parents what they needed to be doing with their children at home and, after a year of seeing benefits, some of them are planning to do the FHC training course themselves.
O’Hanlon gives the example of a 12-year-old girl who used to sleep most of the day. She would be put into a walker that had a brace on her waist and she had a paddle to sit on while she was walking.
“She is now walking on her own. Her dad reported that she got up in their living room and walked across it, totally on her own. She had been taking steps throughout the year, but that was the biggest thing.” Her personality is also evolving, she is interactive and starting to verbalise.
“Using her dad’s words, ‘I have a different child than I did in September, thank you so much’.” Another child became toilet-trained at the age of 12 “which was a huge thing for the family”.
O’Hanlon hears people’s doubts about the programme but she has seen improvements for herself.
Likewise the McKeever family, who have now taken Ronan out of a special school to do home-schooling, which gives Michelle more time to do the FHC programme with him. It requires a lot of time and energy on her part, but the joy of seeing him progress is ample reward.
The Family Hope Center is running a three-day training course iqn Kilkenny on September 8th-10th. Cost €960 including lunch and snacks; €1,795 for a couple. For more information see familyhopecenter.com.
Written by Sheila Wayman (firstname.lastname@example.org) © The Irish Times