Living with a special needs child: The reality

Moneybags journalist Jessica Anne Wood speaks to Melissa Botha, whose son Aidan Freeman has Costello Syndrome (both picture here), about caring for a special needs child.

Aidan was born in 2009 he had severe eating challenges and was in hospital for 13 days. He developed slowly and only starting eating solids that were pureed in a bottle at 11 months.

Aidan was eventually diagnosed with Costello Syndrome after Botha sought medical advice for his feet, where his middle toe was pointing upwards. After answering a series of questions from the orthopaedic surgeon seemingly unrelated to Aidan’s feet, the doctor referred them to a neurologist. They were then referred them to a geneticist, who diagnosed Aidan with Costello Syndrome in March 2011.

The day things changed

Botha says: “That was the big day that changed everything. From there we just had to learn the protocols. Children with Costello Syndrome are very prone to developing cancer, especially tumours in the tummy. I have to scan his tummy every three months for abdominal tumours. He also has a thickened left ventricle wall in his heart, and by that stage we had actually started noticing that his feet were a bit deformed and affecting the way he walked. He was initially diagnosed with something called Culcaneo Vulgus feet, that basically meant that he started walking on the inside of his ankles, and we tried a few things. We tried doing Botox with plaster to try and reshape his feet to get them to the right position. Eventually I was told that we would probably need to operate, which we did, which fixed his feet perfectly.”

Following the diagnosis, Aidan required various types of therapy, including occupational therapy, speech therapy and physiotherapy. “My full time job was driving him to therapy, doing all the homework surrounding it, and trying to get his sensory system to cope. His eating wasn’t great as well, it’s very common with Costello suffers, the first three years of life they can’t swallow, they have a very strong gag reflex. It was hard, because he never thrived with his growth. When new moms take their babies for developmental assessments they all want to see how much the baby has grown and how it is developing. With Aidan, he would literally remain the same, he would wear the same clothes two to three years running, and eventually last year I started him on growth hormones because he’s growth hormone deficient. He’s been growing nicely since then.”

Costello Syndrome is very rare, and Aidan is the second child in South Africa to be diagnosed with the condition. There are now three known cases of Costello Syndrome in South Africa, with only about 400 to 500 cases worldwide.

A support system

In terms of family support, Botha is Aidan’s primary care giver. While her mother assists when and where she can, she lives far enough away, that if Botha needs her help to look after Aidan for a day, her mother needs several days’ notice. Aidan’s father offers a little support, taking Aidan on weekends and the odd occasion when he may need watching during the week.

There is not much support for Costello sufferers and their parents in South Africa in terms of support groups. However, Botha notes that there are many support structures outside of the country that she makes use of. “I am part of a Costello Facebook group. It is a support group of parents that are connected worldwide. I’ve gleamed so much information and support from all of the families that are on there, and it was actually thanks to that group that I found out that Aidan had a tethered cord.”

Botha clarifies that a in the spinal column there is a cord that stretches as a child grows, however, because of the growth hormones that Aidan is taking, he experienced a sudden growth spurt that damaged that cord.

“It actually caused some nerve damage, and after the beautiful op on his feet in 2015 his feet started to turn in under his ankles. So that has caused permanent damage there, it also causes incontinence, so Aidan has battled a lot with incontinence issues since December 2015,” adds Botha.

Daily life

Costello Syndrome hasn’t stopped Aidan from being an energetic and busy little boy. However, Botha says that it is challenging for her as dealing with Aidan’s health challenges has taken a toll on her.

“I think I am suffering with a bit of post-traumatic stress disorder myself and I definitely have adrenal fatigue, so a lot of the time I’m exhausted, and I don’t have physical help when it comes to his care, apart from his dad who takes him on the weekend, on a Saturday for the day and a Sunday, so that’s my time off. If that doesn’t happen, like this last weekend, I had him the whole weekend, which is absolutely lovely, I thoroughly enjoy being with him, but it’s exhausting. So come Monday morning, I actually had to stay in bed for a lot of the day.”

To support herself and Aiden, she runs a cupcake business. It’s challenging, because I’m trying to run a business successfully, and then your energy levels aren’t great, that I find is the most difficult,” reveals Botha.

At this stage, Aidan largely requires assistance with walking but while he can manage at times on his own, he can’t walk far. “Typically if we go to the shops or whatever, I have to park in disability parking, because he can’t walk far. You have your short firing and your long firing muscles, and with Costello kids they don’t have the long firing ones, so he tires very quickly.”

However, while this poses a challenge for some activities, such as going to the shops, it doesn’t stop Aidan from being an energetic and active little boy. He loves doing art and other activities with his hands, as well as playing cricket and rugby with his father.

“He’s quite sensory seeking and he loves rough play. We actually have a rule in my house now that he’s not allowed to fight with mom because he actually hurts me, he’s very strong. He will play rough and tumble with his dad where he actually physically punches him, his dad’s strong enough, he can take it, but he needs that heavy, labour type work,” reveals Botha.

Schooling and work

Aiden attends a school for children who don’t quite fit into the special needs or remedial category, but who would not manage at a mainstream school. However, near the end of last year, Botha was informed that the school felt that it had done all it could for Aidan, and he would need to find another school.

According to Botha, while Aidan is very bright, he struggles with learning. “He’s seven and he hasn’t learnt to read yet, he has his on-days and his off-days when it comes to counting, so today he will be able to count well, and tomorrow he will leave out the five. I think it just depends on his emotional stability for the day.”

She adds: “My goal for him is actually just to get him to a point where he is independent so that one day he will be able to earn a living for himself and preferably be self-employed, so he has the security of always knowing that he can earn his own income. And so that he’s in a place, say for example he doesn’t have a skill with accounting, where he has the skill to employ someone or pay someone to do that for him. If I can get him to that independent level I feel like I would have successfully been his mom.”

The cost of care

Aidan currently undergoes occupational therapy, and Botha wants to start him on speech therapy again. Near the end of last year she started sending him for trauma counselling.

“He’s been under general anaesthetic I think 11 times now, and each time he goes under they put a gas mask on him and he absolutely hates it, and screams and cries and performs, and I’m the one who holds him down, while he’s saying, mommy help me. It’s ghastly, I’m meant to be the one who is helping him and saving him and in the meantime I am holding him down for this horrible thing. After his last op, I thought he actually needs to undergo some sort of trauma counselling to help him cope. His therapist is very confident that she will be able to help him, which is great,” explains Botha.

However, the cost of therapy, medical aid, schooling and other expenses adds up. Botha says: “It’s been insane. It o costs about R35,000 to cover stuff that the medical aid doesn’t cover. For example, his school last year was R7,500 per month andhad we decided to keep him in that school it would be R8, 000 per month. I am actually just in the process of upgrading his medical aid so that more of the stuff is covered. I think we spent at least R70, 000 extra this year just on expenses that we hadn’t anticipated. But on average it works out to about R35, 000 per month.”

People’s perceptions and disabilities

While Botha and Aidan are able to manage daily life with his Costello Syndrome, there are those people who are less than understanding. Despite have a disability sticker in the car, indicating that she can park in disability parking bays, Botha has receive flak from people for parking is these spots.

“The only difficulty I have had is, you pull into these parking bays at shopping centres, and I’ve had it twice at Lonehill Shopping Centre where I’ve actually got a knot in my stomach every time I go there in case some old bat feels that we shouldn’t be parking there because she can’t see any disability. They will look at me climb out the car, and I look fine, so ‘why the bloody hell am I parking in a disabled parking?’ I’ve had it all, I’ve had insults, I had one particular woman, she saw me and started literally ranting and raving in front of Aidan, how dare you park in that parking, that is utterly disgusting. She shouted so loud the whole shopping complex heard. I wasn’t going to justify anything to her, I promptly put Aidan in the trolley and I thought, the cheek, these people have no idea. As it stands, 50% of disabled people don’t drive. There is a 50% chance that the disabled person who pulls into a parking bay is not the driver, and I think there just needs to be a little more awareness when it comes to disability and parking bays,” says Botha.

According to Botha, more awareness needs to be raised about disabilities. There are a number of conditions and disabilities which are invisible to the eye, but they still exist, and therefore these people require disability parking, or extra assistance with what some may deem as menial activities. Before jumping to conclusions about a person and thinking that they are lazy or selfish in their acts, remember that there may be factors at play that you are not aware of or cannot see.

Further reading:

For more information on special needs children, see ‘Special needs children: Will your medical aid pay?