Any lengths for a ‘forever kid’ – even if it means leaving home

Stacey Vee is the kindĀ of parent that puts a special needs child in a home away from home. It’s certainly the type of story that, without context, would get all types of opinions andĀ slating from the other moms on the playground. Before your eyebrows approach your hairline, however, be assured that she’s not a monster – far from it. It could be the best decision she’s ever made for her little one.

This article first appeared on the Change Exchange, an online platform by BrightRock, provider of the first-ever life insurance that changes as your life changes.

special needs childBy Stacey Vee*

It used to be me, you know, judging. Muttering under my breath at the perceived monstrosity of the parents of children like my son. Special needs parents who werenā€™t in it for the long run, like we were. Who would rather put their kids in a ā€œhomeā€ and make it someone elseā€™s problem. Out of sight, out of mind and all that.

It was easier for us to make these snap judgments back then. Travis was a still a baby, and the doctors said: ā€œthere might be some intellectual delayā€. They couldnā€™t tell us more than that, but we were so damn sure that we could fix Travis. If we threw enough time and tears at the problem, weā€™d prevail. ā€œEarly Childhood Interventionā€, itā€™s called in special needs circles.

Complete strangers felt it was okay to tell us stories about their friendā€™s, auntā€™s neighbour who had a daughter who was ā€œthe same as your boyā€. Then this distant acquaintance put their kid in a ā€œhomeā€ and ā€œeverything was okay againā€.

Maybe they saw more clearly how we were struggling, our new family. Newly married, with a (as it turned out, very) mentally challenged toddler who screamed, yelled, flapped, bit his hands almost to the bone. But we just saw Travis, our first-born ā€“ the sum of our love.

Compounding the problem: my husband and I are proud, and stubborn to the point of pig-headedness. We never asked for help. Or money. Or advice. For the first three years we fended off all suggestion of behavioural meds to calm Travā€™s temperament. I wonā€™t bore you with all the medical details; we know how that can make peopleā€™s eyes glaze over.

Our relationship with Travis crumbled under the weight of his challenges. Our marriage stretched thin as tissue paper. The good friends stayed. The so-so friends were gone with the wind.

When Travis was age 5, we started investigating options for what they call ā€œrespite careā€. The first place we saw was a farmhouse, and it gave me the heebie jeebies. Just too far away from civilisation for my liking. The second place we saw was exactly how youā€™d picture a mental institution: cold floors, bare walls, the smell of disinfectant colouring the air.

Then, we met Kerry, who had just arrived in South Africa after running a respite and residential care facility in Dubai and the UK for many years. Who had also had a special needs child, and knew what a family like ours was looking for.

Kerry opened the incredible Oakhaven in Midrand late last year ā€“ a place that puts the ā€œhomeā€ in the ā€œputting your child in a homeā€.

At age 7, Travis started going to Oakhaven over weekends for respite care, and he has never been so happy. So happy, in fact, that he doesnā€™t bother to hide his dismay when we come to collect him on Sundays.

Itā€™s hard to stick to your guns and say ā€œweā€™re not those kind of peopleā€ (you know, people who put their kids in ā€œhomesā€) when you are dragging your kid out to the car by his armpits because he doesnā€™t want to leave his happy place.

It was during one of these car-wrestling sessions that I realised that all this time, Iā€™d been making this search for the right care for Travis about me. My feelings. My guilt. My fears for him. My pride.

When Kerry told us she only had one place left in the residential care side at Oakhaven, we hustled!

Travis is going into full-time residential care on July 1 this year, and trust me when I say, for a ā€œforever kidā€ like ours, this is like being invited to live in Disneyland. Itā€™s expensive, and we have two other small boys to support as well, but this is what Travis needs, more than what I need.

So this proud, stubborn mom is proudly throwing her first fundraising bingo night on June 25 at Old Edā€™s in Rosebank, Johannesburg, so that she can stubbornly make sure her Travis has everything he needs in his new home.

What kind of parent puts their disabled child in a ā€˜homeā€™?ā€

Iā€™m that kind of parent.

* Stacey Vee has worked in the media for the last 16 years, runs a charity and Living Lionheart ā€“ a blog about parenting. When sheā€™s not running her small agency, Stacey is collecting second-hand iPads for families with autism, competing in a sport she calls ā€˜stress-bakingā€™ and kissing better the ouchies of her three devastatingly handsome sons.

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