About Henry
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First Part of Henrys Story – we wrote this in September 1998…
Henry is 8 years old and is a handsome, happy, fun loving little boy who loves to bounce on his trampoline, play tickle monster, play catch and football and loves to watch his favourite DVD’s. He also loves to play with his two older sisters.
Henry was diagnosed on the Autism Spectrum in June 2007 when he was 2 years and 10 months old.
Henry was a very placid, seemingly content baby until Christmas Eve 2004 when he was 5 months old (we remember it well!). That was the first time he woke up in the night in great distress and this lasted until we sought help from the health visitor in November 2006. As well as his sleep Henry was a very unhappy little boy, he was so clingy and got so very stressed in new situations or in large groups and big and busy environments. He didn’t seem to have any motivations, if a toy fell away from him that he was playing with he made no attempt to try and get it by moving or crying, he was virtually mute and didn’t seem to have any connections to the people around him. He showed no emotion and spent most of his time watching the same film over and over again.
Around October 2006 we started to realise that it was more than just the fact he was a boy and we were used to girls or that he was the 3rd child and he was pulled from pillar to post all the time. When we finally looked into Autism the information we found was frightening for us. It was really as if they had met Henry and were writing about him.
After the visit from the Health Visitor we did voice our concerns and Henry was put forward for speech therapy. The speech therapist and the hearing doctor were also concerned by Henry’s behaviour and he was referred to the Child Development Centre where he was first assessed in March 2007 and diagnosed in the June by a very caring Dr Baxi. We were very lucky to have a positive experience during the diagnosis and we can only say that everyone involved was very kind and tactful and respectful of Henry and us for which we are very grateful.
Following his diagnosis Henry was due to start school nursery in the September. Holland House were very pro-active and organised 1-1 care for Henry with Donna Miller. Henry’s introduction into education was for the first 3 months traumatic. Henry was extremely distressed by the whole experience. However with the support and ongoing dedication from Holland House nursery staff and Mark Hill, from Specialist Support Services, Henry really flourished and by the end of the year he had made leaps that none of us thought possible. The little boy who would bite cables and hit out in September was running into nursery, hanging his coat up, collecting his name card, sitting for the register and lining up with his family group at the end of playtime. But most importantly he actually interacted with some of the other children which was amazing. We will always feel indebted to Mark, Donna, Mrs Birch and Mrs Smith for Henry’s growth and development and also to all the other children in the foundation stage who only ever welcomed Henry.
These changes were not totally in isolation. In September 2007 I saw an article in the local paper about a mom and her son and their son rise journey and it advertised a lecture by Raun Kaufman. This lecture totally blew my mind and was just a revelation. I took up the opportunity for a 20 minute consulation with Brian the family counselor and then we applied for funding to attend the Start Up in London the following year.
Me and Warwick went to the first Son-Rise course in February we were both completely inspired by what we heard. For the first time it really made sense to us. We didn’t want Henry to know his alphabet or spell his name, we wanted him to have a friend, to want to be with people, to be able to cope in a loud, bustling place…. For us that was a major step. With neuro-typical children you are used to working to the ‘school curriculum’ – learning their colours, numbers, shapes, to write, to read – when you are faced with the needs of a special child you actually begin to realise how important the social aspects are. Henry was 3 and a half before he waved to me, which was the most glorious moment. When Henry shouts ‘mummy’ or ‘daddy’ we are truly grateful as there was a time when he wouldn’t have even wanted us let alone said our names.
After the Start Up we returned home and started a part time programme in his bedroom just the two of us in the mornings before he went to nursery in the afternoon. It was in his bedroom that we spent many hours joining. Dropping and running animals and rolling balls along the fkoor. It ws when we started son rise that nursery also noticed a big difference in him, like we had seen.
After Henrys dramatic developments at nursery it took alot of soul searching to arrive at the decision to remove Henry from formal education and educate at home under the Son-Rise programme. However, we just couldn’t see Henry coping with mainstream school and the demands of reception. Coping with free play eventually in nursery was one thing, full blown school was another. Henry was constantly just trying to fit in and manage, learning was not really happening. Trying to keep him in one place and not distracting the others.
Before we made our decision to go for son-rise at home we had looked at and chosen a special school for him that was listed on his statement and was ready to attend in that September.
In May 2008 we attended our second son rise programme, ‘New Frontiers’. During this week, again,we learnt so much and it just made such sense to us and felt so right. At one point near the end of the week, during one of the presentations, Warwick passed me a note saying ‘We should do this full time’. We both knew that now we had this information we couldn’t not give it a try.
Son-Rise taught us to love our special children for who they are not who you thought they would be – no matter how hard that is. We all want the best for our children, for us Son-Rise gives us the best chance to reach our little boy and to change all of our futures.
I wrote this back in September 2008 when we first set up the website and it explains how we felt at the time of starting our full time programme.
‘It is with trepadition, excitement and love that we step forward into the next stage of Henry’s life. On 15th August Henry was 4 and for the first time he seemed excited by his birthday, saying ‘wow’ when he saw his presents. For us that was testament to everyone who has come into contact with Henry and what we have all bought to him and we are hoping for so much more on his 5th birthday! His sisters, who have always been his lifeline to our world and who have made such a difference to him with their patience and unswerving dedication, his grand-parents for always trying with him (and especially for my mom who had all 3 children for 2 separate weeks while we attended the Son-Rise Programme – its made all the difference mom!), his little friends at Nursery and especially Josh and Oliver, his partners in crime!, Mark and Donna, you were amazing and gave me some sanity back, thank you!, our friends who without you I don’t think this would be possible, and also Cauldwell Children’s Charity who made it possible for us to attend the Son-Rise programme and the opportunity to create a new future, and last but not least, the son-rise team, simply, Thank you… So Son-Rise, here we come!”
Runnning a Full Time Son-Rise Programme – One Mum’s Perspective
We ran a full time programme from September 2008 until Henry started at school in September 2012. I know that in many cases 4 years is not that long, this is just my personal experience, which may help other mum’s taking on this challenge.
Going from part time to full time and recruiting and training a team and sorting out the playroom was terrifying, literally!
We were really lucky that we had so many people who wanted to be part of the team and although, unsurprisingly, the team changes over the years, one lovely lady, Bridget, was with us all the way through which was amazing. She was a lifeline to me. Believing when I was wobbling and vice versa. I hope all Son Rise mum’s had a ‘Bridget’ – they may change over the time – and i think we all do, it seems kind of essential!
Running the programme was one of the hardest and most challenging things I have done. That first team meeting I can only describe as terrifying!! All these faces looking at me needing convincing that we hadn’t lost the plot! I did do it with some wine, although in hindsight that wasnt the best way!!! Giving feedback was also terrifying! I have some deep seated worry about offending people!! And I kept thinking these people are here to help us! With lots of help from the son rise teachers I did make some head way on this! Still work to be done!! But I knew that i had to do this to be effective. It really helped me when Autism at Home Sarah told me that we are constantly challenging and asking Henry to do things he finds difficult, as his team its important that we also stretch ourselves. Every time I was doing feedbacks I thought ”if Henry can do all he does, then i can certainly help my team to be effective for him’! Feedbacks were never my favourite part, but I like to think I got much better! I must have done a reasonable job!!
Henry has obviously made fantastic progress but I would just like to make it clear that it really wasn’t plain sailing and there were many times when I thought I can’t actually carry on with this, he’ll have to go to special school. And many times when i struggled to even go in the playroom with him. But like Henry, I always came through it. It helped to admit where I was and be honest with myself and to others. Our Son Rise Teachers and Autism at Home Sarah really helped me with this. Also letting go of my guilt. ‘I should be in the payroom’. ‘I should be doing this’. ‘Im neglecting my other children’. Like Henry I was also doing the best I could.
Having your child at home all the time is draining. Any child. But especially a child with special needs. Add in not getting out or mixing yourself. Its no wonder your team become your lifeline. I used to keep the volunteers here for ages while they were filling out the evaluation form chatting! Other than going to work at night I was at home. Now Im not sure I could go back to it, so I really do applaud all you lovely moms that are out there doing it at this time. Its a full time job, without everything else you have to do.
I was not very good at accepting or asking for help, with household chores etc. If you get the chance I would definitely accept or ask.
I seem to have listed alot of negatives there. Please do not get me wrong. It is also the most wonderful experience. I had the most special times with Henry and so many of them. I also felt guilty that i didnt give my girls the same quality time because there were so many special times and because I knew that it didn’t come easily for Henry it was even more beautiful.
I learnt so much about myself as a parent, a friend, a wife….it really is life changing and I feel lucky that I was able to have this type of experience and develop a real appreciation and love of what is important. It has also meant that I have been able to go on and work with other children and families. I always wanted to work with children, and now i do. But in a much more rewarding and wonderful way than I imagined I would.
I just also want to be honest. When you read ‘Son Rise the Miracle’ Samahria was in that bathroom with Raun, it seemed, all the time. She was amazing. But it can be a slog. When you’re getting constantly berated and battered and ordered around and trying to raise other children and dinner cooked, and washing done etc etc etc its hard to keep yourself positive and keep the faith all the time. Sometimes we did think, ‘have we done the right thing?’. Many times Henry seemed to be getting worse. The amazing thing was whenever we did get to rock bottom we seemed to come up and always seemed to be further on. It was like he was having to go through a pain barrier. We were offering him opportunities that were obviously really, really tough for him. But at the time we didn’t know this.
When Henry started to transition into school I felt almost bereaved! Which sounds stupid because he was doing something that I know is unbelievable and more than we could have hoped for, so this isn’t meant to sound ungrateful. It just showed to me how much Son Rise had become part of my life and how important it becomes to you.
Its the most powerful, wonderful, exhilerating, heart breaking rollercoaster Ive been on.
I am unable to fully explain in words exactly what I want to say and obviously this is only my perspective. Other mum’s may have totally different experiences. But I hope that by sharing my thoughts it will help other mums who want to help their children in this way to know that its not about being perfect. The more flaws, maybe, the better. Well, thats my excuse and Im sticking to it!! Love Penny x
