Help Paed! I have a Child with Special Needs (2)

This is the concluding part of the article on what parents and caregivers need to know about children with special needs. Having to take care of a child with special needs come with a lot of challenges, these are not insurmountable with the right help…

What Kind of Help do I Need?

Two categories of Help are needed :-
• for the children with special needs
• for the parents/caregivers/siblings/families.

---

Help for the Children

• Diagnosis – what is the condition my baby really have. Never assume; get a professional to evaluate your child and confirm the diagnosis
• Treatment – medications
• Treatment – therapies
• Psychological support
• Education
• Community inclusion/participation
Early diagnosis;

• Diagnosis – what is the condition my baby really have. Never assume; get a professional to evaluate your child and confirm the diagnosis.
• Treatment – medications
• Treatment – therapies
• Psychological support
• Community inclusion/participation

Help For the Children;
Children observed to have obvious physical disabilities or delay in achieving their milestones should be taken to the Hospital to see a Paediatrician for proper evaluation and treatment. Early diagnosis and intervention often lead to better outcome for affected children especially for children with mild to moderately severe disabilities.

Treatment and therapies;
There are some disability cases that have definite treatment if picked up early for example a shunt can be inserted for children with hydrocephalus. Others may not have specific and definitive treatment but can be managed through therapies such as physiotherapy, occupational therapy, speech therapy and use of assistant-devices.
Inclusive education;
Children with some special needs can attend the mainstream schools that offer supportive and inclusive education. All children with disabilities should be encouraged to achieve their maximum potential by being offered education. For those who cannot attend school, there are special needs schools that may be more appropriate. You can discuss with your Developmental Paediatrician about the best centres available for placement for your child
Support group;
It is quite tasking and overwhelming to take care of children with special needs children. It is important to get all the support you can from friends and families. This may also include joining support groups available for various disabilities organized by organizations and centres who take care of children with special needs. Sometimes, you just need to know you are not alone and don’t be ashamed to ask for help.

Professionals Involved In The Care Of Special Needs Children

• Developmental Paediatricians
• Physiotherapists
• Speech therapists/Audiologists
• Occupational therapists
• Behaviour therapists
• Special education teachers
• Psychologists
• Specialists – psychiatrists, orthopaedic surgeons, Neurosurgeons, ENT
• Diagnosis rest with the Paediatricians especially the Developmental Paediatricians and/or Paediatric Neurologists.
• Diagnosis can be undertaken to a large extent in the Teaching hospitals.
• Some Private assessments by the therapists and schools
• Confirmation via imaging – CT Scan , MRl available though expensive.
• Genetic testing /metabolic – very limited but can be arranged with partners in neighbouring African countries especially South Africa, UK, USA

FOR THE PARENTS/SIBLINGS
• Spiritual – Pastors, Imams, religious groups
• Family – extended family esp grannies, siblings
• Psychological support – psychologists, organizations
• Financial support
• Information and awareness
• Education – Be the expert in that condition that your child has
• Advocacy

 

Challenges parents/family face in care of special needs children?
• Burnt out
• Depression
• Stigma
• Loss of income
• Financial challenges
• Marital challenges
• Lack of support by external family and friends
• Lack of facilities and therapists/specialists for the child
Practical steps in managing a child with special needs
• Get a diagnosis and get it early
• Take time to get well informed about the condition – know the life cycle or prognosis so you don’t get too frustrated
• Seek help in the right places at the right time – Don’t wish the condition away.
• Focus on what the child can do and what you can do something about instead of what you can not handle
• There is nothing wrong with spiritual intervention but do not neglect the medical intervention
• Always take decision in the best interest of the child
• Get Support – it is virtually impossible to do it alone….DO NOT BE TOO STRONG!!!
• As you take care of your child, remember the child is dependent on you; so you are very important to the child as well; so take care of yourself!!!
Tips to taking care of yourself
• Know you are not alone
• Psychological support
• Support Group
• Surround yourself with people who are positive
• Turn your lemon to lemonades
• Prayers
• Respite care