Holly is a strong minded child who likes things done her way. She has severe developmental problems in all areas, physical, cognitive and speech but thoroughly enjoys one on one interaction.
Since Holly turned one, we have worked with a lot of professionals. Our Portage Home Visitor did lots of joint visits with the Physiotherapist, Speech and Language Therapist and Occupational Therapist.
Holly has also had a Paediatric specialist with whom we do joint Case Reviews with the Therapists and Social Workers.
She also sees a Geneticist and a Neurologist at St George Hospital, Tooting, as well as an Ophthalmologist at Kingston Hospital and an Osteopath at the Osteopathic Centre for Children in Wandsworth.
The Portage Journey
We were referred to our local Portage group by our Home Visitor when Holly was around 10 months. We had a home visit from the Portage manager in the July and it was agreed that Holly qualified for Portage and we would start in September when Holly had just turned one.
We were supported by the Kingston Portage Service for 18 months from when Holly was 12 months until she started Nursery at the local Special School, Bedelsford. Holly received weekly home visits and we also attended a weekly Portage Group.
From day one of starting our home visits it was obvious that Portage was going to be a tremendous help to the whole family.
Karen our Portage worker was wonderful with both our girls and Holly’s twin sister Laura was included as much as possible and made welcome at the weekly Portage group.
Karen and I also got on very well and she made me feel very comfortable and free to ask questions and talk about problems we faced as a family and how best to deal with having a disabled child.
Karen is a mum to a special needs child (now grown) herself and also provides foster respite care for other special needs children so had a wealth of personal as well as professional experience to impart.
The Portage group on a Monday morning was fantastic. I had struggled going to normal baby groups and even twin groups so to finally have a group where we could go and have people there to support us and to meet other families in similar positions was fantastic.
That was on top of the activities that we did at these groups which included singing, Makaton signing, sensory room time, messy activities and of course the all important, tea and biscuits.
Planning Targets & Flexibility
Holly is severely delayed and so it was fairly obvious early on that weekly targets for Holly were not the best way forward. I also had a busy life dealing with twins and the structured approach just wasn’t going to work for us.
Instead Karen and I came to an understanding and we looked at every emerging stage with Holly and worked on that as long as it took, which was normally months!
We had long term goals written down but weekly we mostly communicated verbally. I tried to incorporate tasks into day to day situations and tried to involve Laura as much as possible. Karen was comfortable with this approach as she knew that I both understood and would work on these targets and more.
Our home visits soon became structured and formed a routine. Holly enjoys being tickled, so to ease her into the session and to get a good bond formed between Holly and Karen, Karen spent the first 5-10 minutes just tickling Holly.
This early on became an excellent way of incorporating anticipation skills and we still use tickling as a major part of interactive play and even physiotherapy.
After tickling we would do a bit of play with Holly free sitting or the dreaded tummy time, thus bringing physiotherapy targets into the session.
Then Holly would go into her support chair and with the help of a moulded table that my Dad made, Karen would move to more intensive activities.
These included 5 minutes of Intensive Interaction where all distractions where removed and Karen worked on child led copying. Holly adores this and it was fabulous to see her reactions getting better and better each week. She still loves this and will now do a form of this with herself in front of the mirror!
We also had the appropriate cause and effect toys for Holly to develop her understanding and fine motor skills and eventually after about a year moved onto symbols and choice making. Over the course of the 18 months the types of activities changed to reflect Holly’s current achievements.
We are fortunate that Kingston is a small borough and all the child services are housed in one place. Therefore all of the therapists involved in Holly’s care knew and worked with each other daily from the Paediatrician to the Physiotherapist, Occupational Therapists, Speech and Language, Portage and even Social Worker.
We regularly had joint visits which enabled Karen to really target Holly’s activities in accordance to the other professional’s plans. We did a mix of Physiotherapy, Occupational Therapy and Speech and Language Therapy all rolled into playtime.
Transition to Nursery & School
Portage were also wonderful at helping us think about Holly going to nursery and school. Shaun and I expressed a preference that Holly go to our local excellent special school, so Karen arranged a visit for us and came with us. She also arranged for the Educational Psychologist and the school to come and visit us at home.
When it was finally time for Holly to start nursery and for Portage visits and groups to end Karen came into nursery with Holly and ensured that the staff knew what Holly liked.
She attended all the meetings with us and has visited Holly 3 times in nursery since she started. She has also visited me for a coffee and catch-up and kept in touch by phone.
Holly at age one when we started Portage was not mobile, she couldn’t sit or stand or talk. She didn’t play with toys and didn’t engage particularly with individuals. After 18 months of Portage and of course the other therapies, most of which except Physiotherapy was done via the Portage worker, Holly is now sitting independently.
She can transition from lying to sitting, can stand with support and has started taking steps. She is also partially mobile in that she can move around the floor on her back, in conjunction with her ability to sit she can now reach toys that were previously out of range.
Holly with her increased mobility has started to become interested in other toys and this is helping to develop her fine motor skills. She can now point, press buttons and turn switches. Holly can also now hold her own bottle and has just started the journey of using a potty.
Holly now has a few words and will use them in playing games such as Head and Shoulders. She has started to sign and can sign for “more” and can also sign “Holly”. She will also engage you in copying games either by copying you or by initiating them herself such as peekaboo or getting you to put your head to one side then the other in imitation of herself.
Holly also understands simple instructions such as clap hands, push, press the button and can choose between two songs by picking card symbols. She recognizes people and will laugh and smile and put her arms out in greeting.
As a family we thought the Portage Service was fantastic. The partnership that was formed almost immediately between us and the home visitor was a big support at a most difficult time.
Karen enabled us to be able to help Holly move forward and included Laura in efforts as well so that Laura at a really early age is starting to get an understanding of Holly’s needs and does her best to help. Karen was genuinely pleased and proud of all of Holly’s achievements and never ceased to encourage and praise both Holly and the rest of our family for the efforts involved.
It is really uplifting to have such a positive approach and feedback. Karen showed us how to deal with the here and now and to learn to live and celebrate success daily. She also taught us how to look for those emerging skills and to build on them using the celebrated small steps approach.
Legacy of Portage
We were so impressed by how well the Portage Service worked and how it helped to bring Holly on so much that I joined the NPA board as a Parent Rep. to help ensure that other people in a similar position can also benefit from this amazing service.
I also undertook the Portage Basic Workshop so that I could continue with the work that Portage started with Holly. We as a family will be forever thankful to Karen our amazing home visitor and to the Portage Service as a whole. It opened our eyes as to what was possible and allowed us to meet other families that have become good friends.
Everyone has found Holly interesting as she doesn’t have a diagnosis and isn’t following any pattern. For all her difficulties and delay she is a very strong minded child and will not be forced or coerced into anything she does not want to do.
The difference in Holly is phenomenal and gives us lots of hope for the future.
I know that she would have progressed regardless, but we do not believe that she would have progressed so far and so fast without the targeted activities of Portage and the other professionals involved.
We feel like we have the understanding to help Holly progress further in conjunction with the school environment and also feel like we have some knowledge in order to challenge ideas or activities should the need arise in the future.