I believe that parenting a child with a special need is different for each one of us, although it is similar in a lot of ways.  My son, Reese, was diagnosed with a seizure disorder or epilepsy 4 years ago.  This diagnosis came 6 months after he suffered severe traumatic brain injury.

I look back on those first two years and I really empathize with all the parents who are at that stage in diagnosis.  It's a very dark and helpless period.  I feel fortunate that Reese's seizures are much better, although he is not controlled.  I have found through my experiences that there are certain things that continue to help me keep it together.

1) Educate yourself about seizure disorders and any other diagnoses that your child may have.  Find out what is the prognosis of your child, so that you can develop a reasonable outlook for the future.  Also, keep informed about what's available as far as treatment options and resources.

2) Never give up hope.  Hope provides us with the ability to look forward to the future and allows us to have an emotion that is not negative.  So many of the emotions tied to a chronic illness are negative - sadness, helplessness, anger, etc.  Hope is a positive emotion that can be very effective in changing our outlook on the entire situation. Find an acceptable balance of seizure frequency, seizure medications/side effects and quality of life for you and your child.  This is so important but sometimes very difficult to attain.  Being educated about the prognosis will help you be realistic about what is a nice balance for you.  Unfortunately, this is almost impossible early on in the diagnosis, especially if the medications are not controlling the seizures or have unacceptable side effects.  It takes some time  and  some  exposure.  Two years ago I did not feel that I had things in an acceptable balance.

3) Do what makes you feel comfortable; for example, if it makes you feel better, allow your child to sleep in your bedroom.  Talk with your neurologist about any concerns you have about your child's medication regimen.  Most neurologists are happy and willing to work with you to help you manage your child's seizure disorder.

4) Seek Support.  I can't tell you how important seeking the emotional support of others is in trying to juggle home, work, and parenting.  Support from other parents who have children with special needs will help you work through coping with a chronic illness.  You can get so much information from others who have already struggled through things such as special education, the medication roller coaster, sibling management, day care, etc.  Support from your family, church, or community will allow you to take a break every now and then.

5) Always take time for yourself.  We can get lost and caught up in the day to day management of our child's special need that we forget to take time to keep ourselves spiritually, emotionally, and physically healthy.  What good are you to your child and your family if you run yourself into the ground  without coming up for a breath of air?  Tap into your resources and take a break every now and then.  You certainly deserve it.

6) Educate others.  Educating those around you will help you to feel more comfortable with your child's seizure disorder.  People need to be informed that epilepsy is a disorder of the brain.  It is not contagious; not all seizures are grand mal (tonic clonic) seizures, and you can lead a normal happy life with and without epilepsy.

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