Sinead, with daughter Rose (aged 2 years)
Hello, My name is Sinead, my daughter Rose is two and has a diagnosis of Quadriplegic Cerebral Palsy, brought on by Ischemic Encephalopathy (HIE grade 3) event at birth.
Rose was diagnosed at 10 months old after not meeting any physical milestones, lack of and fluctuating tone in all of her limbs, weak trunk and head control.
Although Rose has a physical disability, she is very bright and engaging. Rose is extremely social and brightens up your day with her big smile. Her favourite activity is messy play, she absolutely enjoys plunging her hands into anything wet, squidgy or gloopy. Rose also loves stories, enjoys swimming and has a slight obsession with Mr Tumble and chocolate buttons!
Having your first child with a disability is very emotional and overwhelming at the beginning, there are a lot of unknowns, wait and sees, mum guilt, exhaustion, worrying (worrying and more worrying), and not forgetting the tonnes of crying too. I was brought into the disability world with no knowledge or experience and felt lost and alone on our uncertain journey ahead.
Once Rose had her diagnosis, she began weekly physiotherapy at St Helier Hospital. Through her physiotherapist Cheryl, Rose was referred to the Sutton Portage group. We arranged to meet Cheryl at a local Portage run Friday playgroup 'Playdates' to be introduced to some of the team. Shortly after we had a home visit with the Portage manager Pam and Portage worker Jess, who has now been seeing Rose fortnightly for a year.
From day one of the visits the Portage service has been support to our family. They are wonderful people with a attitude, I really appreciate the focus on what Rose can do and the effort of adapting activities to her abilities. Jess works really well with Rose and makes me feel comfortable to freely ask any questions and goes her way to help us she can. Jess has helped me complete the DLA , she has attended physiotherapy and speech and language sessions to incorporate what we are working towards in her sessions with Rose at home. We are currently working on Rose' communication and starting the EHCP process, without Portage I wouldn't know where to start in developing communication skills or transition Rose into an educational setting.
Through Portage run groups we could attend around Rose' therapy appointments such as Nemo's (group swimming), Tiddlers (baby group) and Playdates (playgroup), Rose and I have been able to get out of the house three times a week and meet families on similar journeys. These groups are invaluable to us, Rose enjoys and participates in all the activities set out and looks forward to seeing staff, volunteers and her friends every week.
I highly recommend Portage to other parents, carers and professionals. We look forward to another year with Jess and the Sutton Portage team before Rose starts school full time.
Chesta, with son Gaivindu
(aged 3 years)
“My name is Chesta and my son Gaivindu is nearly 4 years old and he was recently diagnosed with Autistic Spectrum Disorder (ASD). He was 2+ years when he was referred to Portage by his health visitor after his 2 year review (he had no diagnosis then). He had no words and had problems with his behaviours (eg: repetitive behaviours, low eye contact, less responsive, etc.).
Me and my husband’s knowledge about special needs was literally zero at that point and we had no idea about what to do with him or how to get help. But being introduced to Portage was like a dream come true and we’ve received support in lots of areas run by Portage.
We had fantastic activities to attend throughout the week to keep my son busy and of course to develop himself; Monday - Nemo’s swimming, Tuesday - home visits (every other week), Wednesday - PASC (12 week play & social communication skills group), Thursday - Tactile tales at the library, Friday Playdate at Tweeddale.
I had so many concerns about him as he was likely to find it difficult to develop with other children / adults. But, he gradually developed with all these areas with the fantastic support and eventually he was improving in leaps and bounds which we couldn’t believe.
Further, we’ve been fully supported, to get other support such as a referral to Occupational Therapy (OT), applying for Disability Living Allowance (DLA), giving an opportunity for myself to do ‘NAS Early Bird Program’, referral to a special needs dentist and finally to apply for the best nursery he could get support, which could direct him to the best for his future.
Furthermore, I cannot forget those free trips to the beach, picnics and the Christmas parties where our whole family could enjoy together without any judgements and also to get to meet other parents who are going through similar journeys.
We’ve been so lucky to have Portage support, with the confidence that we are being looked after by a team who is kind, knowledgeable, experienced and trustworthy. I have never come across such a lovely team who could make such a difference to my child and especially the patience they had towards him. The connection they make with the children is amazing. My son loved them as his best friends. Honestly, I have no words to explain how grateful I am with the service I received. With my experience, I trust that this is the best journey a family with a Special Educational Needs (SEN) child could take which would make them feel confident in raising their child.
You are what making a difference looks like”
Avril, mother of Grace (aged 3 years)
Grace (3 years old) was diagnosed with Russell Silver Syndrome and a range of other problems. At six months of age we were referred by our health visitor to the Portage service and from there we were introduced to a Portage worker called Sheila.
Sheila would come and visit us at home regularly, offering play and learning sessions with Grace which she loved. The sessions included playing and singing and they connected straight away and became friends.
Sheila was great at recommending other support and services out there, which is hard to know when you've never been in this situation before - I had 3 "normal" boys before Grace!
Sheila helped us to find funding for specialised equipment for Grace and helped me with forms, letters & referrals. The service also offered me personally, someone who listened to me. When you’re so busy in life with all your appointments at hospitals, in schools and with health professionals etc. It’s nice to have even a 5 minute chat.
Portage have lovely events in the community such as picnics, trips to the seaside, different groups and a Christmas party. They are great fun also you meet people in similar situations and everyone is friendly and welcoming.
I would always recommend portage as they have really helped and supported us through 3 years of ups and downs and some very difficult times. I feel that Portage played a very important role in Grace’s development and journey".
Erin, mother to Connor
(aged 4 years)
4 year old Connor was diagnosed with ASD (Autistic Spectrum Disorder) in late 2016 (he was 2 and half at the time)
Connor loves trains and cars (Thomas and Friends and the Cars movies in particular). He also enjoys messy play, painting / colouring, soft play, going to the park & play-doh.
What is the biggest impact of having a child with additional needs/ disability? People shouldn’t underestimate how difficult it can be. Parenting can be tough, but with an additional need or disability to work with as well – it can be overwhelming at times. Trying to balance everything with day to day life is stressful and puts a strain on family life. Connor went through a period of almost 2 years where sleep was an optional extra. This was exhausting for us as parents. How did you hear about Portage/ PlayWise? Portage was recommended to us by Connor’s paediatrician who held the team in very high regard.
What support did you receive from us?
Connor went to the Portage Stay and Play sessions, the Nemo’s swimming group and Tactile Tales story time all of which he loved. Ryan attended the EarlyBird course for parents of children with ASD plus we got regular home visits from our assigned portage worker Teresa. The support we got from the service was brilliant. Their experience of working with children with a variety of disabilities means they can pass on their knowledge to you as parents. Also they understand and can help parents navigate areas such as the benefits system, education and healthcare. Teresa recommended Sure Start to us and helped immensely with Connor’s Educational Health & Care Plan, which in turn helped us get him a place at the school we wanted.
What impact did this intervention have?
Connor loved all the groups he attended and we both loved going with him. Connor is quite solitary and the team always made sure there were toys for him so that he could play by himself. But they also made sure he was included in all the group activities like circle time. They found the perfect balance for Connor. The support, both emotional and practical, we got from Teresa was great. Connor loved her visits and their playtime together. The activities were both fun and developmental and gave us ideas of games we could play with Connor on a daily basis. The team are all brilliant. The activities for the kids are well thought out so the kids can enjoy themselves as much as possible. Our assigned worker Teresa was wonderful and Connor loved her. On her visits she would blow bubbles for Connor and Bubbles ended up being one of his first words!
She gave loads of useful advice that helped us as parents. Ryan really enjoyed the EarlyBird course and would recommend any parent with a kid(s) with ASD to attend.
What was it like to work with the team?
We cannot sing the portage team’s praises highly enough. Everything they did for us as a family was immense, whether it’s fun stuff, well planned activities to supportive home visits or just that cup of coffee at stay and play”.
Why would you recommend this organisation to other parents / carers / professionals?
It’s not just about the portage team themselves. You get to meet parents who are in a similar boat to you. Everyone understands how bad the bad times can be and how great each victory (big or small) is. No-one is judgemental, there’s no one-upmanship that you can find in other parental groups and everyone shares in the victories and is genuinely happy for you.
We cannot thank these families enough for offering their testimonials for the website. Please remember that these are real people & real children describing the ups and downs of being a parent of a child with additional needs. It has been our privilege to support them on their journey.