Guest post by 'Max's mum' - names have been changed to protect identities
Hi, I’m ‘Max's Mum’ and below is an overview that I hope gives you an insight into some of my experiences as a Carer which have been both positive as well as difficult. It is hoped that some of my experiences are informative, useful and purposeful in helping others as well as helping professionals working with Autistic children, young people and adults, learn, reflect and to consider what improvements can be made to local services within Brent.
Some of the best things about being a Carer include doing all that you can to ensure that the needs of your loved one are met, making sure that they are happy, and that they can make choices to promote their health, well-being and for them to live a safe, happy and meaningful life.
I am the proud parent of an eight-year-old boy named Max. Max is a happy, fun-loving, mischievous clever little boy. He is and has always been very social and curious.
Max is Autistic and received an official diagnosis of Autistic Spectrum Disorder (ASD) when he was two years and six months old. Diagnosis of Autism in children is based on a child's developmental history and observable behaviour.
Early signs, action taken to support Max and the process of Max being diagnosed as Autistic
Before Max was 12 months old, due to behaviours that Max displayed both at home and within the community, it became apparent to me that Max might be Autistic.
A day in my life as a Carer starts early and ends late. My son sleeps well throughout the night, but not for long, so to get things done, it is necessary to wake up a lot earlier than him and to stay up late into the night after he has finally fallen asleep.
During the early morning or late at night, I can get things done such as cooking, cleaning, reading, researching or planning things to do to ensure that my son has lots to keep him busy and stimulated and has what he needs to develop and to thrive. We have travelled throughout London and beyond to access services that will help him now and in the future.
Messages and emails are usually responded to as soon as I read them on my phone, not because I have so much free time, but because otherwise, there is no time to reply to them and they will be left unanswered.
Like all children the needs of my son are varied and they change over time. Being flexible to his needs is not problematic. The problem is continually having to advocate, educate others and engage in battles and fights, to access appropriate support and services for my son to ensure that his needs are met. This can be on the bus when he needs to sit due to being overwhelmed. My son is a priority customer on TFL, and he has Medi alert I.D. that I refer to, to simplify requests for his support needs to be met when required if I need to request that a priority seat is made available to him by anyone who may not need it.
Having to read legislation and other guidance related to how he can access a service that is available to him to promote equity is something that I have to do regularly. 'Professionals' often say, "Carers need to develop their resilience'". Professionals probably regularly discuss this when training or during their CPD sessions. Resilience is "the capacity to withstand or to recover quickly from difficulties."
There have been occasions when I have laid in bed during the day and slept. I can imagine some people thinking, 'I wish I could do that.' On such a day, if my son is at home unless he needs me to make something to eat for him, he tends not to wake or disturb me because he has come to realise that if I am asleep during the day at that point, I have no more energy left and my body has decided to take a break, so all the resilience in the world is not going to make it possible for a 'quick recovery' to be made.
Several factors contributed positively to Max receiving the correct official diagnosis when he was very young.
1. Max displayed many behaviours that some Autistic children, young people and adults may display, which I was able to observe and report to professionals within Brent, who worked with Max and our family. Max was and still is sensitive to audio, visual and other stimuli. By observing him it was, and still is, usually possible to work out what his support needs are, and to meet them.
2. As well as having family members who are Autistic, I had previously worked with children, young people and adults who are Autistic.
3. The third factor, that supported Max in gaining an accurate and timely diagnosis, was input from appropriately trained and competent Professionals who we encountered within Brent. When Max was approximately 12 months old he attended an initial screening with a Speech and Language Therapist at Hope Family Centre (now closed), who engaged in direct work with Max. Following this Max was referred to a Paediatrician and over the next 18 months a multi-agency assessment was undertaken.
Sources of support within Brent and London that Max and I have accessed, where we have received support in person or online
Family and friends
By learning more about Autism, I am able to learn about a wide range of strategies that were effective in supporting Max’s specific needs. I share these with family and friends to ensure that Max’s developmental and support needs are met in a range of settings and that others are able to provide appropriate care and support to him.
Brent Early Years Services - completed an early help assessment of Max’s needs and help me to find a Childminder, who looked after Max for 15 hours a week. Her input was very beneficial to Max. She had the willingness to listen and learn and was responsive to Max's needs and worked in partnership with Max and me. She attended the Autism Show with me and this supported us both in gaining more knowledge of Autism and how we could best support Max.
Drop-In SEND provision in Brent
Max attended Drop-in Portage sessions at Three Trees Children’s Centre (now Three Trees Well-being Centre) and drop-in sessions that were held at Fawood Children’s Centre (now Fawood Family and Wellbeing Centre).
While attending these sessions, Max’s specific needs were extremely well met by appropriately trained and highly competent staff.
As well as engaging in play sessions, attention Autism sessions with Max, play therapy and meeting his sensory and other needs, I was provided with key information about Max that helped me to meet his needs as an Autistic child.
Identifying a Nursery Place
Max needed to be assessed within the mainstream section of a community Nursery School within Brent for an application to be made for him to gain a place in the Additionally Resources Provision (ARP) of Granville Plus Nursery School. The staff worked in partnership with Max and me and implemented supports to ensure that Max was able to remain in the setting, when due to his sensitivities due to being Autistic Max engaged in behaviours that are 'perceived to challenge'.
Granville Nursery - ASD Parent Support Group
This was a group that was facilitated by workers from Brent Early Years Service and Granville Plus School - Horizon ARP (Additionally Resourced Provision.)
As well as speakers who provided invaluable information and guidance, including a Highly Specialist SaLT (Speech and Language Therapist) (who was outstanding), Autistic young people, and other parents of Autistic children and young people, this group was a space where parents and carers could share experiences, ideas, tips and provide and gain support and encouragement.
Parent and Toddler Groups (my experiences from 2015)
When I attended Parent and Toddler Groups within Brent although they were receptive to Max and I attending, in hindsight they would and probably would still benefit from training about what measures they could very easily implement to provide inclusive provision to ensure equity to all children both those with and without SEND.
Brent Housing Department should work towards training their staff, at all levels about the needs of families where a child, young person or adult has SEND.
I had to engage in years of battling with Brent Housing for Max’s needs to be taken into consideration.
Brent SENAS (Special Educational Needs Assessment Service)
Brent Special Educational Needs Assessment Service should work towards further training their staff, at all levels about the needs of families where a child, young person or adult has SEND.
I had to engage in many years of battling with Brent's Special Educational Needs Assessment Service. I took Max’s case to SENDIST (Special Educational Needs Tribunal) on two occasions, in an attempt for Max’s needs to be adequately assessed and for an appropriate school to be gained for him.
Max is currently attending a school that can appropriately meet his needs, where he is happy and he is doing well.
Brent Parent Carers Forum CIC - Services and support need to be reviewed and planned in co-production with parents.
Brent Local Offer - Needs to be reviewed and co-produced with children, young people, adults with SEND and their parents and carers. Brent's Local Offer website needs to be formatted so that it is much more accessible and broken web links need to be deleted.
Brent Carer’s Centre - Excellent support advice, advocacy and support provided.
Early Intervention Service - (Bromley) - Invaluable Early Years in-person support.
Jason Roberts Foundation (Brent) - Jason Roberts Foundation offers SEND Provision that has competent, trained staff and youth mentors, who are responsive and work in partnership with children, young people and adults with SEND and their parents and carers. JRF take on board new ideas to meet needs and ensure that inclusive provision is provided and equity is promoted and championed. JRF’s work is the standard to which all services in Brent should aspire to provide to all SEND families.
Music House for Children (Shepherd’s Bush) - Max participated in Music Therapy, interactive music sessions, performances and concerts, in addition to engaging in online activities that aided his development significantly.
Pedal Power (Finsbury Park & Emirates Stadium) - Max was supported in learning how to cycle and is able to safely cycle during sessions at Pedal Power.
In-Deep Music Therapy (Westminster) - Max participates in Music Therapy, interactive music sessions, performances and concerts, in addition to engaging in online activities that continue to promote his development.
A2ndVoice (South London) - Max is able to engage in social activities where his specific needs as an Autistic child are fully taken into consideration and met. We engage in activities with A2ndVoice, where I am able to meet and learn from Autistic Adults, young people, trainers and mentors, with whom Max is able to interact and gain support.
Chalkhill Community Centre SEND Parent Group - in conjunction with Wembley Central Big Local - Excellent provision provided by SEND parent(s) and other volunteers within Brent.
Equivalent (Brent) - Excellent provision provided by SEND parent(s) and other volunteers.
Brent Gateway Partnership - Excellent support advice, advocacy and support provided.
Brent Children with a Disabilities Team - My son and I have developed a very positive relationship with my son’s current Social Worker. My son also liked the other two Social Workers who were allocated to support our family. However, listening and collating information accurately so that relevant information was compiled into one assessment resulted in ongoing positive outcomes for my son.
Other Parent Carers and other Carers have been, and continue to be another source of knowledge, advice and support for me over the past eight years. When Max was younger, I wish that I had attended more settings where information and ideas were shared by parents and carers of children, young people and adults with SEND.
Brent is the second most culturally diverse borough in the UK. One of the many major changes that are needed within Brent, is that ‘Cultural Competency’ when working with SEND families needs to be gained and consistently implemented and reviewed for needs to be appropriately met.
Autistic children, young people, adults and their parents and carers need to be listened to so that appropriate support can be provided and so that equity is provided to all children, young people, and adults with SEND within Brent.