Special Needs Parenting (A Personal Story)

Motherhood is not an easy journey and to Sarah (not her real name) this couldn’t be truer. At the tender age of 3 months her son was diagnosed with hydrocephalus. Which is accumulation of fluid in the head due to a blockage in the spinal cord preventing spinal fluid from passing. The risk with this condition is that the fluid can eat into the brain matter causing brain damage and the longer it takes to diagnose the larger the extent of damage.

She discovered the condition when their child was 3 months old during his clinic visits. The doctor noticed that her son’s head circumference had significantly increased since their last visit and hence he requested for a CT scan to be done. The scan confirmed that he had hydrocephalus and would need urgent surgery to prevent any serious brain damage.

Sarah was explained to the two treatment methods available for this condition. That included placement of a shunt which was the most common method but it meant that her son would have subsequent surgeries as he grows to replace the shunt. The other mothed was an endoscopy of the third Ventricle (ETV) which entailed creating an opening on the third ventricle to create an alternative channel for the fluid to pass. This method often doesn’t require another surgery in future but was a relatively new procedure. Sarah opted to go with the ETV which was successful and after she took her darling boy home, she believed the worst was now behind her, but that was not the case.

She began to get worried again when she noticed her son was not meeting his development milestones. It was only upon consultation with her doctor that she discovered her son had suffered some brain damage due to the hydrocephalus. “(At the initial diagnosis) they don’t tell you nothing. We only found out the effects of the condition when he wasn’t meeting his milestones.”

Due to the delayed milestones, Sarah had to now register her son for occupational therapy and physiotherapy which was to be done thrice a week. The cost of these therapies was a huge struggle at first but her doctor then recommended they try the Association of the Physically Disabled of Kenya which was much more affordable than other medical facilities.

Her next struggle began when she had to find a suitable school for him. Most government schools for special needs children were not adequately equipped and the private schools which had the facilities were far from where they lived or too expensive. Even integrated schools would charge parents more if their child was a special needs student. They eventually settled on an integrated 8-4-4 school near their home but had to pull her son out after she noticed that they were not paying attention to his learning development. She later enrolled him to an IGCSE school which came with its own set of challenges which led to them finally settling for the ACE system. “We moved him to ACE system where he could can learn at his own pace with a shadow teacher,” shares Sarah.

Another challenge Sarah has faced is getting a suitable health insurance cover which caters for special needs procedures such as physiotherapy and with minimal restrictions and conditions such as a 1 year waiting period.

Her motherhood journey has not been an easy one but she has managed to brave the murky waters. “Initially it was hard. I used to question and wonder, and cry at night wondering where I went wrong”. Her greatest coping mechanisms has been the “shoulder” she gets from online support groups as well as exercises. She also strives to set sometime aside for herself to relax and re-energize.

Her advice to mothers of special needs children is “to take it easy; it may seem like you are drowning but at the end of the day everything will be okay…when you get that diagnosis everything may seem like a blur but it does get easier eventually.”

She would also advise building owners to try and make their facilities disability friendly such as placing a ramp, be it for residential or office use. “The government should also work to enforce this.”

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