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.
Childminder
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.
Housing
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.
Max's Mum.