JUST WILLIAM
After a difficult pregnancy and 8 admissions into hospital with blood loss, William was born 9 days early at 4 lbs 14.5 oz. A tiddler compared to my first son, but perfect in every way. After a week in SCBU we were allowed home, although William remained very tiny and unable to take the breast. He had his first fit age 16.5 months, and we got a diagnosis of WHS at 22 months. The medics never gave a great prognosis, and life became a series of hospital visits, therapies and sleepless nights. I wasn’t going to be told by any medic that my son “won’t attain much”. No way. I had William in Play therapy, music therapy, physio and speech therapy, hydro therapy, portage – in fact anything I was offered – I took it. I found an alternative therapist privately who showed me how to ‘skin brush’ – we pursued this and got rid of his infantile reflexes which he still had at 4 years of age, we also used the skin brushing around his mouth and got him chewing. The medics knew very little of WHS and that our kiddies growth is slow and in small increments. They wanted to put a peg in, I said ‘no way’. My son was eating, so his so called “failure to thrive” was not because he couldn’t eat, it was due to his genetic condition. I was educating the medics on WHS – their medical manual drew a bleak and inaccurate picture. It’s not been an easy path, specially as a single parent since William was 3.5 years old, but one thing is for certain that young man has taught me mountains – the medics do not know it all! As parents, WE are the professionals in our children’s condition. William is at the higher operating end of WHS – he walks, talks, DJ’s at our local special needs disco, does work experience at college, and is a social butterfly. Everyone who meets him falls in love with him. He is a delightful free spirit, and full of love and laughter.
I loved reading this. I am Grace’s nannie, we too were told not to expect her to have any ‘quality of life’, to read your story is so uplifting. I know that my daughter started this, ‘WHS on balance’ site, to counteract the medical gloom and doom, that families get faced with. Every loving parent knows that hope is essential for the well being of a family unit and yet officials, of many varieties that we encounter seem intent on looking on the dark side. Grace does far more than expected. Unless we cultivate these precious children, like the exotic blooms they are, the special lives they lead and gifts they bring will go un noticed. I would love to know more about the brushing techniques, could you post more about those please?
Hi Everyone, I have been asked to supply a little more information on the skin brushing technique I described in ‘Just William’. Up to the age of about 4-5 years old William still had several infantile reflexes, namely – the clenched fists, feet that curled under (like a new born), startle reflex and an inability to chew. At a WHS Conference I spoke with a parent whose daughter had undergone Brushing Therapy in order to eliminate infantile reflexes. I managed to find a practitioner who lived within accessible distance and we started on the programme. Basically it involved brushing around the affected areas (mouth, feet, palms) using a small paint brush like a child might use. The brushing was repeated twice a day, concentrating on one area at a time over a period of weeks. I can’t remember how long we continued the programme for, but we went weekly for some months, with me brushing twice every day at home. The overall outcome was, William’s startle reflex diminished, as did the clenched fists, curling feet, but best of all he started to chew. I have included a link to the Henry Spink Foundation for details about Brushing Therapy. All I can say is, it worked for our little man! http://www.henryspink.org/brushing_therapy.htm