respite and special needs

Growing up, my mum worked (and still works) at a special needs school for children with severe disabilities. She loves her job and from when I was about 7 years old we began doing respite care- which for those of you who don’t know is a care service where you essentially take in a special needs child and care for them for an agreed period of time to provide their main care givers with some relief. 

We cared for many children with many disabilities. I grew up with a boy called ross, we had him from when I was aged 7 to age 12 (I think?) and watched him grow into a 21 year old who moved into sheltered accommodation. 

I was a little scared of being around a person with special needs, which feels like a shameful thing to admit but I believe it showcases my growth. They were unpredictable, and there is a stigma in society, and I suppose it boils down to a fear of something happening to them that I couldn’t help them with while I was with them.

I was terrified of seeing a seizure because I wouldn’t know what to do, it’s never nice seeing somebody else suffer. People don’t seem to question their fears surrounding the topic of those with special needs and it hardens their heart. Emotional intelligence is key, because you can learn yourself out of fear.

I can’t exactly remember what ross had, but I know for sure that he had severe cerebral palsy which meant he had a wheelchair, and he was non verbal. He loved old TV shows like the chuckle brothers, mr tumble, and some others. He would get really excited and laugh a goofy laugh when something was funny. He would clap, and smile. He was such a loving soul. He was kind and happy. 

His family loved him so much, our family began caring for him overnight as well as just a day at a time, and both sets of my grandparents offered him respite while we were staying at their house. 

I remember my Nanny Heather crying when she first met him because she was from a small town and loved children/ young people. I think she was shocked that some children and families live with disabilities like this, but loved what she could offer them. The same love and support she gave to my sister and I.

At the time I didn’t realise how beneficial this was to my growth and how blessed I was to experience growing up with somebody like ross. 

Now, as a 21 year old, I know to mind my own damn business when I see a 12 year old being pushed in a buggy with a dummy in. I know to be kind and understanding to anybody I meet. I can even recognise with more ease when a person needs a little extra help and guidance if I’m serving them in hospitality or if their carers backs are turned in a supermarket.

We also cared for another boy called felix. He was 12. He had autism, a condition that I can’t remember the name of, and severe epilepsy. He was non verbal and he had to wear a helmet at all times because he would fit very hard and he knocked his head a few times which caused damage.

He was cared for to the absolute best of his parents ability, but you can’t protect your child from everything especially if they are prone to seizures. 

Felix loved being outside, playing football, and he didn’t take well to staying still. 

I remember our family took him to a soft play centre once and I was waiting with him in the basket ball court. A mainstream little boy couldn’t understand why he wasn’t talking back or why he was being ‘rude’- and I remember as the angsty and angry 13 year old I was I said “he doesn’t understand” in a very angry way and the boy looked sheepish. 

There was a lot going on in my personal life and my parents got divorced, so felix was the last child my family cared for doing respite. My mum continued to care for people, but I didn’t meet another special needs child on a close basis until I was 18. 

What I learned from caring for felix is that society is still very uneducated and special needs children need protection just as much as society needs education.

Despite not doing respite I learned a lot about special needs just from being around my mum. I learned the basics on how to sign macaton, I learned the intricacies of various disabilities (especially autism), and I learned things on a more practical basis.

At 18, my (now) little sister Katie came into our lives. 

My family had all met her before me. My Mum knew her from the school she worked at, my sister used to voulenteer there so met her before, and my stepdad had helped my mum with respite when I was not there.

I remember the first time I met her and I smile so much at the abrupt randomness of it.

My Mum was living in a TINY house and I didnt have a room there. I stayed round for a few months because I needed a break from life, and in that time I was sleeping on a mattress on the living room floor.

The front door was in the living room.

One day I woke up and Katie was watching TV sitting on me on the mattress. She was eating a little snack and was mesmerised by the TV, she was so little and I just thought wow. ok. I will protect you with my ENTIRE life you unbothered legend.

The respite hours increased, and eventually we fostered her. 

It was the day after my mum and stepdads wedding that she became a permanent, full time part of our lives. There is a picture of my Mum and Stepdad dancing their first dance with katie on my Mum’s hip at their wedding.

Katie is my sunshine. Our family could not love her more if we tried. It makes me emotional to think how much I love her so god only knows what I will be like when I have children of my own. 

She is non verbal and we began having her for respite when she was 6. We fostered her when she was 7 and now she is 9. 

Katie has autism and an undiagnosed syndrome. 

The thing about many children with special needs is they sometimes never get a real diagnosis, especially if their condition is so rare. 

Katie’s syndrome means she ages at a slower pace to mainstream kids, both physically and mentally. 

Before she became a member of our family she had a couple of operations. One to correct a lazy eye, and one stem cell surgery which was thought to correct her cognitive development. I’m told that it may have improved it, but not too much. She can grow hair now though. She has a beautiful curly blonde mop that perfectly fits her mischievous little personality. She loves disney cartoons, peppa pig, noddy, I’m a little princess, and making people laugh. She loves sensory things, especially when it comes to playing with water. Lately she likes scribbling and hiding under blankets. 

Since being with us, katie has grown a lot (mentally and physically), she is less anxious, and she can speak a little now. It takes someone who knows her to understand her, but she can say “yeah”, “da” and “ball”. Other language she uses is mainly just babble that we have grown to understand over time. Like “duh” means she wants to watch Donald Duck”. “Ee” is the noise she makes when she calls my sister lucie. She will scream “ooooo!” which means shes singing and she wants to watch frozen 2.

And she has made progress signing but her sign language is mainly made of katie-isms too. 

She is also making progress with independence. 

She can walk better and often climbs things now that she has grown into a more fierce little queen, which is a blessing and a curse because if the stair gate is unlocked and my back is turned she will help herself to cereal while tipping it all over the floor.

And everyday I learn something from this complex, giggly, sassy, wide eyed heart stealer of girl. 

Respite care and fostering is not for everyone, but now I am older I understand that this was the biggest blessing in my own development. My mum loves making a difference to children who need it and inadvertently showed me how resilient, loving, strong and determined parents of special needs children are. 

I cared for people young and old growing up, mainstream and non mainstream, and I have learned compassion. 

I have learned the impact of a supportive family, the open mindedness and accepting hearts of people in mine and my mums life, and I have learned not to judge people. I have learned that anyone who would prefer to live in ignorance while living in a world full of education is simply not for me. And I have learned that if a person does not have an open mind and a care for others, I have no desire to pander to that persons mindset.

In society, we give up on people really easily. We can be negligent, fearful and defensive of things, people, mannerisms that we don’t understand. We make fun of people we don’t understand with no regard for how that person feels inside. 

We can be so wrapped up on the darker side of life that we don’t notice blessings before our eyes. And we forget the impact we have on people without going too far out of our own way. 

These children just experience life in its purest form. They are people. They have personalities. Being around one will crack your heart open so wide that no matter what pain you’re faced with in life, you can’t really shut it again. If you get to know these children, they teach you unconditional love.

I don’t really know why I wrote this other than to express my love and gratitude, and to encourage people to see the world in a purer light.

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