Downs Syndrome
Children with Downs Syndrome will have access to specialist paediatric support when they are born. They will monitor their heart and development closely to understand each child’s particular presentation. Downs Syndrome is a spectrum, some children have more needs than others and this is why there is early close monitoring of their needs so that an individual package of support can be identified.
Children with Downs Syndrome can have heart, bowel and feeding difficulties when they are born, this is very individual to each child. Your doctor will help you understand what will be needed in your child’s case.
Some children with Downs Syndrome can be delayed in hitting their milestones due to something called low muscle tone. This low tone makes it much harder to do things physically. One way to help this is by having lots of opportunities to lie on their tummy (some babies are not keen and might cry, but making it fun by using play and distraction, check with your specialist or health visitor first, but try and aim for a little bit in every hour on their tummy to help their development and this can be from a very early age). Using lots of tactile sensory play like messy play and water play can really help children develop their sense of self, supporting physical development and fine motor development.
Every child does things in their own time and there are considerable ranges within which children can develop. It is important not to rush stages and do things in your child’s timeline as rushing can mean you skip developmental stages which can cause problems later on in life.
Your child’s specialist team and health visitor will monitor your child’s development. If they need physiotherapy, occupational therapy or speech and language therapy they can refer into these services. If you are worried ask your health visitor or specialist team for advice and support, they will help alleviate your worries.
Take time as a family and get to know and enjoy your new baby. The websites below offer excellent support and advice for families.
https://www.downs-syndrome.org.uk/about
https://www.pcp.uk.net/together-21
Epilepsy
Epilepsy is a common condition that affects the brain and causes seizures. Seizures are bursts of electrical activity in the brain that temporarily affect how it works. They can cause a wide range of symptoms.
There are many different types of Epilepsy ranging from vacant episodes to Tonic Clonic seizures. People can have one type or a number of different seizures. It is really distressing to witness a seizure, but if you do then clear the space around your child and remain with them. Call 999 for help immediately.
Diagnosis of epilepsy is done by a specialist consultant following a number of tests. The main test will be an EEG – Electroencephalography. This measures the electrical activity in the brain and is completed by a specialist team.
If a diagnosis is made you would access specialist support from the Epilepsy team at the hospital in your area. These are specialist Epilepsy nurses who will complete a health care plan that explains your child’s epilepsy, what their seizures look like and how to help them. This care plan will go to school and any external clubs your child accesses. If emergency medication is needed, then training is provided from the specialist team. Your child will be reviewed at least every 6 months to ensure the medication is right but if you notice any increase in the frequency or strength of seizure then your contact would be your Epilepsy nurse whose details will be on your child’s Health care plan.
For more information click on the link below:
https://www.epilepsy.org.uk/info/what-is-epilepsy
Feeding
Children can be fussy eaters at different times, again often related to the different experiences in their lives. Children with additional needs can often restrict their own foods due to sensory preferences or in a bid for control. Knowing how to manage this can be difficult especially if communication is more difficult. There are no quick fixes with eating. It is important to be consistent and remember these things can take weeks or months to change a habit.
OT tips: When developing cutlery skills use different shaped and material cutlery and allow children to play with them at all times, not just at meal times. Practice those fine motor skill games, lots of pinching and using fingers to feed is ideal when starting to wean.
Below is a link to the general NHS advice for younger children who are fussier with their food. There are elements of this that will be useful for children with additional needs as well.
The second link is to the National Autistic Society advice and this can be used for a range of children not just those with Autism. It contains helpful hints and a step-by-step guide of advice.
https://www.nhs.uk/conditions/pregnancy-and-baby/fussy-eaters
https://www.autism.org.uk/advice-and-guidance/topics/behaviour/eating
https://mamaot.com/fine-motor-activities-using-household-items
Child Health and Wellbeing Network
The North East and North Cumbria Child Health and Wellbeing Network works to bring organisations together to design and deliver joined-up services to provide improved outcomes for children and plans to make a real difference to children’s services. Their vision states:
In the North East and North Cumbria we believe all children and young people should be given the opportunity to flourish and reach their potential, and be advantaged by organisations working together.
The Network works with people from all sectors across the region: such as Health, Education, Local Authorities and the Voluntary and Community Sector as well as with children, young people and their families too. The Network aims to achieve meaningful and realistic engagement with key stakeholders from across the North East and North Cumbria.
Current priority areas, which were defined by the system, are Mental Health, Poverty, Additional Needs and Vulnerability, Inequalities and Access, Best Start in Life, Health Promotion and Childhood Illness. Following the first surge of the COVID pandemic the priorities were reviewed and Family Support was added as an additional priority area.
The Network is keen to invite people to join their journey- for more information on becoming a member and receive their newsletter, or to hear about projects and plans, please contact the Child Health and Wellbeing Network team via england.northernchildnetwork@nhs.net
More information is available at:
and /or at twitter via @NorthNetChild
Invisible disability lanyards
Some disabilities are not obvious to others, but you may still genuinely need some additional support. The Hidden Disabilities Sunflower was created to encourage inclusivity, acceptance and understanding. By wearing one you are letting others know that you might need some extra help, understanding or a bit more time.
Other useful weblinks
www.nenc-healthiertogether.nhs.uk
https://learningdisabilitymatters.co.uk
https://maudleycharity.org/families
https://www.healthwatchmiddlesbrough.co.uk/what-we-do
https://teesvalleyccg.nhs.uk/our-work/hartlepool-stocktons-needs-led-neurodevelopmental-pathway
