Things I would like to say (re: grieving my little sister)

Things I will cover in this blog:

  • Some lessons about self-imposed limitations
  • A back story
  • Things I would say to anyone caring for special needs children

I notice that my own self-imposed limitations stop me from doing what I need to do in this world. I struggle to have belief that sharing my experiences will be of any benefit to others, but I notice how others sharing their stories and how they overcome things helps me. I’m beginning to think that I should give back. Withholding my stories and methods of getting through things could be selfish, and stop me from connecting with others.

I’ve always struggled to express negative emotions. I don’t like coming across ‘weak’, I don’t like thinking that anyone would think I’m trying to do a ‘poor me’ thing. I struggle with feeling unsupported, so I tend to spare myself the lack of emotional support by not reaching out. This makes me come across as cold and defensive.

Because I put such pressure on myself to be strong, and because I feel such responsibility to have my shit together, I can sometimes project that pressure onto others. When they’re grieving, they don’t need it. When I feel anxious and distressed, I can send out orders. ‘you do this, why can’t you just do that, it’s not that hard, can’t you see how strong I’m being, why can’t you be stronger than me’. In the past, I’ve blamed people for circumstances happening that are out of my control.

Sometimes the case is that people either cannot do anything to help or do not recognise their power to do something. You can’t control other people, so if something is happening and there’s no way to stop it, it’s because the soul wanted to go through it.

It’s easy for me to be angry at the foster care system, or whoever is there for me to villainise, but that’s a waste of my time. I can see the logic of this situation from an objective, souls journey point of view- even though my human emotions are still there.

My foster sister is going to live with her birth parents on 1st May. She’s not my foster sister, she’s my sister, but technical terms seem to matter.

It’s taken me a lot of reflection and after removing myself from the environment, I can see that my sister is now in a position where she can develop on her own. I can see how fierce her self confidence is now, she’s going to a life where she will be cared for. I trust that she can care for herself (to an extent), that she can have fun, be adored, be happy and healthy despite such a change in circumstance. I can see how she might have duty to play a role in someone else’s life. And I can see how my family is being called to care for a different child, who is currently living a life full of abuse, fear, neglect- in a far worse position that my little sister is going to ever be in. What I thought was a new family has turned out to be a duty to serve.

The way I dish out orders is probably a sign that I should be doing something with what has happened.

So yeah. I want to talk (first of all) about what I would say to those caring for a child with special needs (which my sister has). Just from my perspective.

I will give a back story and an opportunity to get to know me, because my perspective on this situation might be beneficial to someone.

I have done respite for special needs children since I was 8 years old. My Mum has worked in a special needs school since I was in primary school. The first boy we had was older than me, but still had the mental age of about 3 years old. He had cerebral palsey, he was nonverbal, and he had autism. We cared for him until I was around 11 and by that time he was old enough to go and live alone in accommodation.

We had another boy when I was 12, who I regrettably didn’t get on with too well. At that point in my life I was going through a lot and I just didn’t have the capacity to care for someone, but I remember I stood up for him on a few occasions where other kids picked on him. This boy was nonverbal, severely autistic and had really bad epilepsy. It was bad enough that he had to wear a helmet at all times because he would fit so hard that he gave himself brain damage by bashing his head.

My parents split up and I fell out of the loop of respite kids. My Mum did respite, I went with my Dad after the divorce and didn’t see/ talk to my mum for a year or two, I was kinda dealing with my own stuff.

By the time I was 18 I was back in contact with my mum, and at this point she was living close by. She was living in a tiny house that barely had space for my birth sister (who actually lived there). In late 2017 I had a breakdown and needed to be around people, so I stayed at my Mums for a few months. I was sleeping on a mattress in her tiny living room for a long time. I didn’t want involvement with any more respite kids, but one day I woke up in the living room and there was this small child with a mop of curly blonde hair and big blue eyes sitting on me eating a snack. I was just like, wow, I love you. I want to protect you with every fibre of my being. We cared for her a lot before fostering, the hours kept increasing and she was even at my Mum and Stepdads wedding, she was a part of their first dance. We were asked to foster, and of course we did. We got to move to a house that could comfortably house both my sisters and my Mum and Stepdad. We were under the impression that we would have her until she was 18- 3 years go by and we have formed a huge bond with her. I wouldn’t have it any other way. She’s the most incredible, beautiful human being. However one thing leads to another, a bunch of stuff happens, and very suddenly we get the news that there will be a court case to decide if she will be going back to live with her birth parents.

My sister is going to live with her birth parents (abroad) on the 1st May. I already said goodbye, I had to say goodbye before the rest of my family because I needed to go back to university. There wasn’t much way round that.

I spent as much time as I could with her before leaving, consciously acknowledging that time was running out. From the look of my social media, you wouldn’t expect that I was grieving. It’s been in the back of my mind to talk about this.

I haven’t been able to get what I want to say out because I’m overwhelmed taking on so many identities at once. I’m at uni getting on with my life trying to build networks and friendships, trying to get on my course after this foundation year. But like, I may well never see my little sister again. I think about her all the time. Every time I see something in a shop that I think she would like, every time I hear the toy story theme, every time I think about my family I just cry. I wonder if she will feel betrayed or abandoned by me because I’m not there.

In these last 3 years (particularly), I have been thinking of all the things I would want to say to someone that doesn’t know how to appreciate someone with additional needs.

I wrote a different blog, but I have more things I want to say.

  1. You have to see things from all angles. We as humans tend to only see things through the lens of whatever emotion we are feeling at the time, but your soul doesn’t care about that. If you want to get through pain and feel your soul and break through to the next phase of feeling like you belong- you need to float up and see things from all alternative perspectives. You need to see how nobody else is the villain in their head. You need to accept that your feelings do not monopolise the situation, and nobody else is obliged to feel the same way you do. Take responsibility for your own feeling and concentrate on what you can do to get through them. Do NOT impose your emotion on children.
  2. Treat special needs children as though they understand everything you say. I cannot express how serious of a point this is. We don’t know and we never will know what these children retain, we will never know what life looks like for them. So give them the same decency you would give to anybody else. Freely speaking about how they’re a burden to you, generally speaking about them as though they are not there speaks volumes about your character. Not in a good way. It suggests that you as a person believe a person worth equates only to how able bodied they are in your small, shallow perspective. If they cannot understand your words then it’s very likely they can pick up on the general feeling that is being directed at them. Caring for those with special needs is not easy, and I can especially understand that it is difficult when you are dealing with external stresses, and you are unhealed from trauma you haven’t had a chance to look at. That’s on you though. It is your responsibility to own the reasons why you are finding things hard, and solve those problems. It is not a childs fault for being as they are, and they are not an inconvenience. They are a blessing. They will teach you so much about yourself and they will love you. You owe them the basic decency of giving them patience and respect.
  3. People get embarrassed being seen with special needs children. I have been in the supermarket, at the park, in town with my sister before while she has been in full blown autistic meltdown. Screaming, crying, trying to make herself sick, throwing herself to the floor. Thinking about it, there are probably people walking past me with nothing but judgement in their heads. They could be going ‘it serves her right for being a young mum’, ‘what an awful parent she is’, ‘what a disobedient child’. They could be having general arsehole thoughts, and I don’t care. In that moment, I couldn’t give less of a shit. I am tunnel visioned on this child and how I can get them out of this situation. First of all, trying to see myself through the minds of other people is a complete waste of my time. What can these people do for me? Nothing. If you have trauma, other people’s perception of you can feel like the most important thing- but these people won’t do anything for you. If the people around me are having thoughts like that, I have no desire to associate with them at all. The child I am dealing with, however, will be there when I wake up in the morning. After this outburst, when things have settled, they will give me a hug that could soothe any kind of wound or stress in my head. They will love me, appreciate me and think the world of me. Their eyes will light up when I walk through the door and see them after work. The highlight of their day could come from me sitting and watching mickey mouse clubhouse with them. The love and connection you form with this child is more overpowering than any insecurity that comes from dealing with a tantrum in public.
  4. If you take the effort to learn the language of a child with special needs, you will not have to question their love for you. If you sedate them, talk about them in a negative way, shout at them- they will not bother forming a connection with you. If you bond with them, they tell you what they’re watching and thinking. You might have to watch programmes with them and really have patience to figure out what their sign language means, but you will get to a point where you know what they are saying. You have inside jokes with each other, you have games with each other, they will run up to you and throw their arms around you and give you a kiss. They show you love and connection if you give them reason to feel safe and loved with you. This child is here because your soul wanted to learn a new way of forming connection. Take advantage of that.
  5. Caring for a child with special needs makes you a better person because judgement is no longer your go to. I see a kid who looks about 9 years old sucking on a dummy being pushed in a buggy and I think ‘ah, that kid probably has a disability’. I don’t judge because I’m no longer pea brained. I have a ‘how can I help’ attitude to life now.

This is a tangent, but it’s a good example of what I mean.

Once I was on a bus on the way to the train station, and there was a man who was really phlegmy. He was coughing and making horrible noises with his throat, and the whole bus was getting a little disgusted at him. Tutting and generally being disapproving. After a few stops, a man sitting at the back got off the bus and on his way to the door, offered this man a throat sweet.

That really stuck with me, because the whole bus had the automatic reaction of separating this man from themselves and their human nature. The man who got off thought ‘I don’t like this, and the man with the throat problems probably doesn’t like this either. How can I help?.

That is the kind of mindset that will make you a very happy person in life, and it’s something I carry with me.

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