A parent’s perspective
The loneliest world to live in
If you have followed my blogs for a while, you know that they are focused on Billie and I try and write from a view of her world .. well the best I can anyway. But for this blog, I thought I would write it from my perspective. As a parent of a child with SEN.
Although there is so much more information, awareness and people openly telling their stories of their connections to SEN, it can feel like the loneliest place in the entire world. You know you’re not the only one out there whose child has autism or other neurodivergent disorders but somehow you really can feel like the only one. Speaking personally, I am a military wife and we are currently posted overseas away from any family or friends or any sense of normal so you instantly feel disconnected from the people who you feel could really understand. The people you love and those who love your children. You can Skype, FaceTime, text and call every day if you wanted but it still feels that they will never really get the grasp on what it’s like.
Don’t get me wrong, I am not hard done by. I live in a beautiful part of the world and I have great friends who I have met out here and others that we have known for longer but none of them are in your situation- just as you are not in theirs. I truly believe that my friends love and care about us and Billie but will they honestly and truly get how you feel?
No.
No matter how much you try and tell them. It’s hard to connect your kids at times, especially with children who have needs such as Bills- she hates being touched, loud noises, doesn’t talk, doesn’t imaginary play, doesn’t play with toys in the “normal” way or doesn’t understand other children so it can become almost instantly a disconnect. I find myself hiding from play dates a lot with Billie. Not because of my friends or their children, but because of me and because I know how hard and uncomfortable it is for Billie to be placed in those situations. Even when I really want to go and just see and chat to other human beings, it would be so selfish to put Billie through that for my own gain. On the other hand, we also don’t put our entire lives on hold - we can’t. We have Frankie to think about too but it is a big moral juggle every time. I also feel bad on my friends children sometimes when they try to play or interact with Bills and she instantly gets upset or disengages. It’s the not the other child’s fault and I would hate for them to think they are doing wrong when they’re not.
I’ve spoken about how much she struggles being around her sister before and 16 months later, that is still the case. She probably struggles the most around Frankie than any other child. Home life can be extremely tough- especially when Alex is out working all day and I’m home alone with the two of them. I can’t take them both out together far because Billie won’t sit next to Frankie in the double pram so 9 times out of 10, we spend our days in the house. I try and get Frankie out to play dates when Billie is at pre-school but the timings don’t always work. There are probably more miserable days than joyful in our house with the girls. Life is harder- I can’t even bath them both at the same time. Some days, they can’t even be in the same room as each other as all Frankie has to do to upset Billie is literally look at her. I have spent countless days beyond stressed, sad, anxious and again, very lonely.
We definitely have more good days than bad with Billie as an individual but there is always something going on in the background whether that’s appointments, diagnosis, sleep problem, eating problems, traits changing and becoming more apparent, meltdowns, meetings, schooling …. The list is endless. It doesn’t switch off - ever. There is always and I’m sure will always be something else on the horizon that you have to put your whole heart into and fight for. I am absolutely not saying that being a parent to a NT child is a walk in the park and they have no issues at all but what I am saying is our issues are different. I have one child with autism and another who is NT and although generally speaking Frankie can be harder with her toddler tantrums etc. I would take that over autism any day. Now I’m not bashing Billie- she is my entire world and she doesn’t mean any of it, it’s just who she is but the stress and anxiety that comes along with it is something I can not describe in words.
It’s hard for me to ask my friends on advice about Bills because the situations are never the same. How can they be. This is what I find hard. I can’t just pick up the phone and ask about toilet training, dropping dummies, eating and sleeping because it’s all different and you can’t handle things in the same way. Up to now, I have zero friends who are going through the same things. I have nobody who I can just relate to or get things off my chest too and them just instantly get it. There isn’t a helpline I can ring to ask for specialist advice - even health visitors only have limited knowledge on autism. They know the signs to look for but that’s about as far as it goes.
I’m quite vocal about Billies autism because I don’t see a need not to be but some people aren’t the same and I respect that. I have only very recently learned of others on the station I am based at of having children with SEN or autism and I’ve been here almost two years! Yet, when I have found these people, they have all admitted how great it would be to meet up with other parents of children who are similar to theirs and be able to talk. So why doesn’t this happen? Up to very recently, I have never met another parent whose child is like Billie. And when I say met- I mean had a brief chat on Facebook but not in person. How crazy is that. I do think it can feel like you’re the only one in the world who’s children aren’t meeting certain milestones or if your child struggles too be in certain social situations when your in the moment. When you’re surrounded by all other families who are living the life that you pictured you would live, it can really emphasise on your differences.
Sometimes, even the people you’re closest to don’t make you feel less alone, although never on purpose. Me & my husband are both going through the exact same thing. We are both parents to the same child yet we are dealing with it all totally differently. We view it differently, cope differently, let it affect us differently, find comfort and reassurance in different things. I can sit and talk to him for an hour about what I’m struggling with or what I think should be our next plan going ahead and he can answer completely differently or sometimes not at all. Not because he is being rude or doesn’t care but because he is a lot more chilled out things. I’m the action planner. I like to learn and research and share my experiences where is a total closed book who keeps a lot too himself and just goes with the flow of things. It doesn’t mean I am alone however it can make me feel lonely.
I want to get the message across to anyone that feels lonely or that nobody understands what they are going through that I am always here to listen. Just send me a DM- it can literally just be you having a rant and I will listen. There is a huge community out there of people all feeling the same and all going through the same process and emotions so nobody should feel as though they are alone in this.
Speak soon, xo