18 April, 2009




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Even More Special - Having A Child With Special Needs Or Disabilities

For some the news comes early, during pregnancy, shortly after birth or when your baby is still young. For others, discovering your baby or child is a little more special than you already thought comes later. The time when your baby's special need becomes apparent can be stressful, with many mixed feelings.

pregnant womanWe all dream of perfect families, this may be two point four children playing happily in the garden, shiny car in the driveway and a three bed semi in the suburbs, or a sprawling country cottage with a dozen offspring at your ankles. Whatever you image of a perfect family, it is unlikely that you plan on having a child with special needs or a disability. This doesn't mean you would love your child any less, just that our expectations are often shaped and governed by the images we see through books and media as we grow up, and that these seldom portray disabled children as part of a perfect family.

Having a child with special needs or a disability presents us with extra responsibilities, additional stresses and very special moments. The news that your child is a little more special than you expected can be distressing, with the need for further assessments and a myriad of questions in your head lying unanswered. It may feel that you are totally alone, and that no-one could ever have been through this before, but do not lose heart… there are many parents out there right now, undergoing the same or similar worries and anxieties that you are experiencing. Whatever you are feeling, take a deep breath and give yourself a moment to consider these issues.



What to do if you think your child has a difficulty
All parents look upon their child as perfect, unless of course they are shaving the cat or crayoning on the walls. This perfection aside, you may become aware that your child is somehow different. This may be more a feeling and difficult to find something to put your finger on, but worries you all the same. If you suspect that your child may be affected by some form of special need or disability it is important to be clear at what is wrong. Rushing into getting a diagnosis can be just as damaging as not having a diagnosis.

All children develop at different rates, and have different skills. Don't panic if your child doesn't read at the same age as "little Joe" next door. If you do feel that there is a serious concern, however, discuss your concerns with your Health Visitor or GP. Be clear about what you are worried about and give examples of what the difficulty is or when it occurs. Your Health Visitor or GP should then either lay your fears to rest or recommend a medical assessment to gain more information.

Equally, you may have concerns that need discussing with your child's teacher. Once at school, especially Infant and Primary School, your child's teacher is likely to spend a large amount of time with your child, observing their social and academic capabilities. These observations may again be able to lay your fears to rest or support your concerns.


On having the news
You are holding your baby in your arms for the first time and marvel at how beautiful he or she is. This tiny bundle that you already love so much that you would die for him or her… then the doctor comes in with a sombre face. This is often the time when your life as a parent is shaken. On the other hand you may not notice anything until your toddler struggles to walk. Or, problems may not become apparent until your child reached pre-school or school age. Whatever time you discover your child has a special need or disability, the experience is likely to be distressing for you and your family. Parents often have a sense of bereavement, where they mourn for the "child they thought they had" with all the hopes they had attached to becoming a parent.

  • Families with children affected by disability tend to have lower incomes, whilst facing higher living costs, greater levels of stress and family difficulty. Additionally, there are statistically more instances of lone parents and higher levels of unemployment in families where there is a child with disabilities.

  • Most families with disabled children have great difficulty obtaining suitable childcare services, due to lack of access and appropriate services and the costs of specialist childcare.

  • Many nurseries and childminders fail to cater for children with disabilities due to lack of confidence, training or resources. However, this should now be changing with the enforcement of the Disabilities Discrimination Act 1995 which means service providers may have to consider making permanent physical adjustments to their premises to allow access to services.

  • Lack of adequate transport can impact on families' access to services.


Issues Affecting Families with Children with Special Needs
Your child has a special need or disability. At your lowest point it may feel that life has stopped, game over, forget planning for the future and just focus on coping. Life can become a cycle of just that… coping. You may look at yourself, your child and your situation and wonder why you are so low or feel stuck in such a rut. This rut is not likely to be of your own making. In fact you are probably the last person who wants this to happen. Here are some statistics that may explain why.

website Web site: The National Association for Special Educational Needs

website Web site: Family Fund - For Families of Children with Disabilities

website Web site: MENCAP

website Web site: For Parents By Parents

website Web site: Time To Get Equal - Countering Discrimination


Help!
If your family are affected by disability you may feel you need some form of assistance. This may be in a purely financial sense, and good advice regarding what benefits you are entitled to may be sufficient for your day to day needs. You may also find that additional costs occur on occasions…such as following a house move or after initial diagnosis. In these circumstances where, for instance, you may need a room converted to accommodate a child with a disability, there are numerous charities and funds you may be able to access. Again, discussion with the Benefits Office may provide you with some assistance such as Budgeting Loans. However as a Naval family you may also be entitled to funding or grants from Naval sources.


Financial Support or Assistance

3-D pound symbol for british moneyPhone: 0800 882 200 - Benefits Helpline - Disability Benefits

info More Information: Support Services & Support Groups

info More Information: Naval Charities

info More Information: Financial

website Web site: Benefits Agency - Disability Pages

website Web site: SSAFA - Special Needs

website Web site: Family Fund - For Families of Children with Disabilities


Practical Support and Assistance
Practical and emotional help can be equally important, especially for Naval families with children with disabilities. If you have a child who is disabled in accordance with a medical diagnosis he or she may be technically classed as a "child in need". This does not reflect on your skills as a parent, but recognises that many children affected by special needs and disabilities need extra services to allow them to develop and flourish to the best of their capabilities. This classification of "child in need" means that you are likely to be entitled to additional services from your local authority social services department.

These services vary from area to area, depending on the needs assessed within the community, but are likely to include services such as:

  • Provision of a place at special needs groups and clubs - to enable you and your child to meet others.

  • Respite Care - Long & Short Term - to provide you and your child with a break from one another.

  • Sibling Support - extra activities are occasionally provided for siblings of disabled children. This is aimed at countering any feelings of being left out or being less important, and giving the siblings some special time.


Extra Support in School
Your child may be assessed for additional support at school. The Local Education Authority may provide your child with a "Statement of Educational Needs", referred to as "statementing" in education circles, indicating your child's educational needs in relation to any physical, mental or emotional difficulties they are experiencing. This enables your child's school to access funding for any additional services your child needs. Further advice and guidance regarding "statementing" can be gained from your child's school, your Local Education Authority or more specialised support groups.

website Web site: Service Children's Education

website Web site: Ask MENCAP - Online Information

website Web site: SSAFA - Special Needs

website Web site: Teachernet - SEN Pages

website Web site: Advisory Centre for Education


Special Educational Needs Allowance
Extra financial help is available to Service families with a child with Special Educational Needs. This is due to the higher fees often associated with special needs education. SENA can be paid in conjunction with Boarding School Allowances in instances when children attend special needs residential schools, and requires your child to be registered as having special needs with the Children's Education Advisory Service.

Phone Icon Phone: 01980 618244 - Children's Education Advisory Service

info More Information: Education - Educational Allowances


Keeping Your Head Above Water
Parenting is stressful. Anyone who says otherwise has never brought up a child. Parenting a child with special needs or a disability can be doubly so, where putting your child in the car or popping down to the shops can require serious preparation. These extra needs can lead to you feeling physically and emotionally drained, so much so that you can find yourself reaching cracking point. One thing that helps you prevent yourself from going over the edge is good support networks and stress management.


Support Networks
So what are Support Networks? Support Networks do what they say on the tin…they are networks of friends, family and organisations that you have around you to enable you to cope. These may be phoning your mum in the evening to vent off, having a friend who visits for coffee or respite childcare to give you a break. You may already have these networks already, or may need to develop them. Take a look at who you have around you. They don't have to be physically nearby, but someone close is often useful in an emergency.

info More Information: Parenting - Dealing with the Stress of Parenthood

website Web site: Contact a Family - Disability Support

website Web site: Ask MENCAP - Online Information

website Web site: SSAFA - Special Needs

website Web site: Parentzone in Scotland

Download Downloadable File: My Support Network (PDF)
To view the PDF file (Portable Document Format), you will need Adobe Acrobat Reader®. Click here to get your FREE download of the software.


two people sitting on couch talking

A Crisis Shared is a Crisis Cleared!
There will be times, especially during long deployments and detachments when things get really hard. Problems occur in all families at some time, and we all need some help, even if this is just advice. Don't assume that you are the only one able to be responsible for your child. Speak to teachers, midwives, GPs or whoever is involved with your child. These can provide a good sounding board and provide advice where needed. In an emergency call 999. Additionally, NPFS or RM Welfare can offer support to families experiencing difficulties.

Phone Icon Phone: 0808 800 5000 - NSPCC (24 hr)

Phone Icon Phone: 0207 404 5011 - Cry-sis Helpline (Open 8 am - 11pm)

info More Information: NPFS & RM Welfare

info More Information: RNcom Help Desk

website Web site: Home-Start

website Web site: Parentline Plus

website Web site: Ask MENCAP - Online Information

website Web site: SSAFA - Special Needs

website Web site: NSPCC


 


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