Tips for Parents of Children with Complex Needs

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Children with complex needs are those with an illness, disability, or sensory impairment that requires significant additional support on a daily basis.

A child may be born with these needs or may develop them after experiencing an injury or developing a disease. Just a small list of conditions that may require an intense level of support include brain damage, spinal cord injuries, multiple sclerosis, and muscular dystrophy.

If your child has complex needs and you are keen on providing him or her with all the support you can, keep the following considerations in mind.

Getting Ready for Testing

Although it can be frustrating, testing is key to determine the extent to which your child may need additional support.

If your child has received a cerebral palsy diagnosis or if their doctor suspects they have cerebral palsy (CP), recommended tests will usually include an MRI (to determine the existence and cause of CP), an EEG (to measure electrical activity in the brain), and a cranial ultrasound (to look for any other type of brain disorder as well as CP).

These ‘big three’ tests will usually be followed by tests for vision, movement, hearing, and intellectual disability.

It may seem like a lot, but arming yourself with as much information as you can will help you strategize and personalize your child’s educational and treatment plans to the greatest extent possible.

Finding Support as a Single Parent

If you are a single dad raising a child with special needs, in addition to searching for organizations centered on your child’s specific needs, you might also find forming part of a Single Fathers association helpful.

Parents without Partners is an international organization offering social opportunities to parents and children. Responsible Single Fathers provides resources and information for single dads, Exceptional Parent is a great magazine featuring information on everything from assistive technology to everyday tips.

By speaking to other parents you meet at school and in other social settings, you can discover groups and resources catered to you in your area.

Organizing Respite Care

Even if you are a stay-at-home parent and you enjoy spending time with your child, if you are a single parent, you may need personal time and need support. You might also need to work full- or part-time and need someone to help you while you are making a living.

In the U.S., personal assistance services (PAS) are provided to over 13 million people. Aid is given with tasks such as eating, bathing, grocery shopping, cleaning, and cooking. Some personal assistance is provided by friends and family members; other types of assistance are paid for via public funding and private insurance.

survey conducted for TLG showed that 79% of parents with disabled children need some type of personal assistance. It is important to inquire about free aid available to you, balancing these with out-of-pocket care if required.

If you are a parent of a child who has just received a diagnosis of a condition involving complex needs, be prepared to learn as you go along.

Initially, testing will inform you of how much extra support you will need so you can plan everything from your own work arrangements to your child’s schooling and treatments. Arguably the best source of information is other parents you meet at school or at treatment centers.

Dedicated organizations will also provide you with key resources and information on support with daily tasks.

Jeff Campbell

Jeff Campbell is a father, martial artist, budget-master, Disney-addict, musician, and recovering foodie having spent over 2 decades as a leader for Whole Foods Market. Click to learn more about me

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