All the things.

It's almost March 2022. Did anyone tell you? ALMOST. MARCH. 2022. 

They always say the days are long but the years are short when you have little children, don't they? Well. These years have lasted a lifetime. So, so, SO much has happened and is happening and I just haven't found the strength, inspiration, whatever, to try and chronicle our lives over in the Motherland. So here I am sitting in the middle of soft play, on a Friday afternoon (aka The Hunger Games), hoping my child is somewhere in that big cage of wild animals having fun and not causing mayhem. A perfect setting to gather one's thoughts and try to make sense of the madness that has been our lives for the last...well...forever really. Perfect. 😰 Oh my god, there is just so much screaming. SO MUCH. 

I actually don't know where to start. There is a constant shitstorm of stuff to sort and agencies to phone and things to chase and paperwork to fill in. It is endless. Actually, actually endless.

Emilio has been in school full time since the end of October and really loves going. Like, I can threaten him with not going to school as a way to get him to do something (go on, judge my parenting - go oooooon!). He has a one to one support person and is absolutely challenging every single person he comes into contact with in that no one really knows what to do or how to best support him. With the best will in the world, there just isn't enough specialist knowledge or experience or skills or resources in a mainstream setting to provide him with what he needs for his very unique, complex situation and neurodivergent humanness. If I could just run through briefly what that is, in no particular order: 

• a five year old
• a five year old with no experience of nursery or previous access to typical social situations with peers 
• a five year old who spent the previous 18 months pretty much locked up with his mum, who was trying to work (teaching, on Zoom, all the time), often with no childcare
• autistic
• a sensory seeker with both proprioceptive and vestibular challenges not being supported due to being locked up in Lima for so long
• spent his first 2 years 9 months in an orphanage
• adopted by a mad foreign woman who brought a new language into his life as well as a myriad of animals
• significant language development delay
• motor planning difficulties
• lost an important caregiver in the middle of a pandemic with no warning and no explanation
• moved house twice then moved country twice in the middle of a pandemic
• moved house yet another time once in new country
• flung into a big, busy school with 80 children in his year group and not a single person who understood him 
• has then lost another temporary childcare person because mum is now working full time
• has new, often overwhelming, experiences, people, places and situations literally every single day

I mean, my head is spinning and I deal with this stuff every day. Imagine, just imagine what it must be like inside his wee head. He has had more happen in his wee almost six years on this planet than a lot of people have in their entire lives. And he has very limited ways of communicating how he is managing all of it, what he feels about it, if he is coping with it. In fact, I really couldn't tell you at all what he thinks about most stuff. What I do know is that there are times when he really, really needs me and, because I'm a solo parent and need to work so that we have what we need in life, I'm not always there. So my heart breaks and I get stressed out and don't manage it at all well and therefore he does not get what he needs from me then either. 

Oh, it is a mighty, mighty shitshow.

We are very lucky in finding some really excellent people who are doing everything they can to help get the support in place for him at school. After months of kind of trying to figure it out and trying to get all the people on board, we now have a team consisting of an OT (who I may or may not be crushing on 😂), SALT (Speech and Language Therapist), communication device people (Keycomm - Edinburgh and the Lothians - amazing service!), ASN (Additional Support Needs) service, disability social worker, Ed Psych, community child health as well as his teacher, three assistants and Deputy Head. That's quite a squad. I think there's been a bit of an 'oh shit, school are really not coping and he's really not coping and this guy is way more complex than we anticipated' type of scenario and they are now coming together like the G7 summit to make a game plan. It is undeniably frustrating watching from what feels like the side lines, while everyone scrambles together to try and work out what to do and how to understand him and what he is trying to communicate: I just want to be there in the middle telling everyone what to do because, obviously, I KNOW BEST. But on the flip side of that, I am constantly full of fear and anxiety because I actually often DON'T HAVE A CLUE. Emilio's current party trick is legging it out the classroom/up the playground/wherever, meaning that he is not completely safe. You may recall this particular fondness for just tanking off from me from previous life in Peru and brief stop in NYC. Why don't you run out of a restaurant and half a block away before I catch you in the big, busy city, Emilio? Why not? I have CLEARLY not been pushed to my very limit yet!! I digress. At school, yes, the gates are there but all it takes is for someone to forget to close it...and we are all human and we all make those mistakes. It's just that a mistake like that might mean my child getting hit by a car/kidnapped/getting a job in Scotmid and no one being any the wiser! This is obviously my anxiety taking over and sending me down the rabbit hole of the deeply disturbed 'what if' scenarios...but I lived in Venezuela, my son is faster than a big bag of fast things and I have a very active imagination. What's a person to do?? A friend said to me the other night that I should maybe stop trying to do everyone's jobs for them and let the people who are responsible for my son between 9am and 2.45pm do their jobs and figure it out for themselves. It's not entirely clear why I'm unable to do that or why I don't feel like he is their responsibility or why I still feel like I have to apologise for all the difficulty. What is that?? My kids in my class are my responsibility and I totally always feel that. I'd never call a parent and tell them something their child had done and then expect them to tell me what to do - this is literally my job. Deal with the stuff on my watch with their input about whatever is going on at home, etc. But I somehow feel like I have to try and fix everything for E and for everyone around him. Could be the hangover from being locked up in Lima. Could be just the solo parentness of it all. Could be that I'm a giant control freak and never realised this before. I really don't know but it's definitely a big part of the constant tightness in my chest/lack of sleep/overactive mind that feels like it's going to actually explode most of the time. 

Anyway, the next step is looking at a more specialist provision for him. And so begins the battle of trying to get him a place whilst fighting the battle in my head as to whether this is actually the right thing for him. You know how they don't give out a rule book when you have kids and you just have to kind of make up the rules to the game and hope for the best? Well. When your child is adopted and also autistic, this game is uplevelled by about a squillion. And when you've no other Adult Human to help you make the decisions, well... I don't actually play games coz I think they're stupid so this analogy is falling to pieces but it is REALLY, REALLY HARD, OK???? We are just at the beginning stages of finding out about it and it's obviously complicated and there are very few places and they're obviously all taken at the moment so... again, I just don't know. My dad used to say to me, when I'd talk about bringing Emilio to live in Scotland, that I was better where I was with all the support I had there. And I would be flabbergasted (what a bloody brilliant word) because I was just so lonely, I didn't see how where I was could possibly be more forward thinking/clued up on autism and trauma than the UK, and that having a nanny wasn't the same as being with your family and friends. Now we are here and my soul is much, much happier but holy moly, everything is hard. Every. Single. Thing. Childcare - impossible. Therapies for E - on the waiting lists. Working/living/going to school in the same area - FAIL. Finding somewhere to live that suits our needs, in the right area, that won't mean I'll have to sell my body (though, really...😒hah!) - IMPOSSIBLE. It is just all a massive struggle. There is definitely far more in the way of support services and advice and advocacy groups and stuff here than in Peru but man alive, is it hard accessing it! Phoning all the people, chasing the paperwork, filling out more fecking paperwork is honestly, potentially, maybe even harder and even more of a full time job (on top of my full on full time job) than the adoption process in Peru. There! I said it! But I said maybe... It's truly exhausting. And I think the irony about that is that we parents of children with additional needs or adopted children or children who just don't fit your typical mould are already friggin' exhausted. We already have so many extra bits to our lives as it is. And then we are expected to find out the information, fight for the support, shout as loud as we can that our kids need more, source the support, fund the support, find out why there isn't the support and continue this until we die and we. Are. Already. Exhausted. Why is it like this? Why??????? I say all this as 'we' because I've had the great fortune of tapping into a little group here of adoptive parents and parents of children with ASN - haven't met too many people in person because when in the chuff have I got time for that, but there are some excellent online groups who are a font of wisdom and care. So, so many of our children are just being failed, failed, failed by the system. So many of our children aren't in school. And so many cases are just accepted as that being the way it is. I think this is probably for another blog post rant...

So it is hard. It keeps being hard. I keep waiting for the time when someone asks how I'm doing and I can just say, 'yeah, grand' and actually mean that. But that time seems like a very distant land from here. 

  

Another hard thing that is hurting my heart a lot is the smack-you-in-the-face reality of no friends. When I used to picture our lives here, I imagined that I would have loads of parent-friends from school and E would have his wee pals. One of the reasons I did not want to stay abroad and have him go to my school was that those parents would never be my pals; the richy rich don't mingle with the help (with the odd exception and you're lovely and sorry but it's totally true!! 😆). But because of our lives taking us on this cu-ray-zee rollercoaster from leaving Lima and going to NYC then kind of sending us skidding to a halt in Scotland, skint knees and mud all over our clothes, we weren't able to start school at the same time as the other kids so I didn't get to do the new P1 parent chat in the playground and make friends. And Emilio being as he is means he doesn't come home and tell me about his classmates. When I talk to my friends with kids, they are always off to birthday parties and playdates and whatnot. We are not. I've made a half hearted attempt to try and connect with some parents on one of the groups but honestly, have I mentioned I'm tired?? It's just one more bloody thing that is a huge effort. And then there's the fact that he is different so he won't play the way the other guys do. So it's putting ourselves both out there and hoping that it's ok that he won't really speak and he's likely to play by himself or be right up in that child's grill, shouting 'HI BOY!!' and whatnot. And that is also exhausting. Just this weekend, we have been at two soft plays and had two situations where he has not been met with kindness/understanding/acceptance but instead hostility and judgement. Fortunately, I don't think E really notices other people's reactions to him but the truth is, again, I really don't know. At that first soft play (one week later, back in the same place!), I was sitting doing some work so not really paying attention when I saw the guys that work there all gathering and looking for someone. My heart sank. I knew it would be Emilio. I went down to find out what was going on and it turned out that he'd jumped on the counter of the snack place and then was entertaining himself by pressing all the levers of the soft drinks...this was not the first time he'd delighted the staff with that particular hobby... I apologised profusely, said I'd pay etc and went to try to find him. But I was stopped by one of the staff who told me he 'wanted to talk to me' because he'd had a complaint that Emilio had pushed over another kid and didn't stop to say sorry. Well, no. He won't, will he? He then went on to say that he'd just heard Emilio was 'severely autistic' at which point I nearly f*cking lamped him. STOP WITH THE FUNCTIONING LABELS!!!!!! Then he asked if I was on my own. 

What??

I'm not going to lie, it took everything not to start crying in the middle of that arena, surrounded by screaming children, watchful parents, judgey eyes and the staff all looking at me. Yes. I am on my own. Yes. He is my child. Yes. I know he's likely to run rampant but I did indeed let him go in and play without watching his every move. Yes. Yes. Yes. And yes, I understand that you're basically saying if we come back again, I'm going to have to go into that friggin soft play with him and not leave him unattended. So there goes that tiny little piece of time where I can sit with a coffee and either get some more work done or attempt to read a book or write this stupid blog while my son is living his best life charging round a place where he's safe and can't escape. There goes that, too. Then I watched today in another soft play (yes, we do spend our lives in soft plays, what of it?!) as a very angry mother literally yanked a ball out of his hands which he had clearly stolen off of her kid. The aggression! Unreal. 

 

These are not unique incidents. They are not infrequent. This is the reality of being the mother of a child who is different. It is absolutely soul destroying at times and it is pain like no other seeing him be misjudged and misunderstood and treated like that. I've spent my teaching career falling for the wee ones who have a tough time with behaviour and trying my very best to understand them. Kids aren't the issue. Ever. I remember one of my wee tootsies who had such a difficult time and seeing the parents stand outside my classroom bitching and gossiping about what this wee girl had done now every single day. Eventually I asked for a meeting to try and teach these parents that their kid might be struggling with maths, that other one couldn't make the letters bump together to make a word yet, another one again who couldn't hold their pencil properly yet. Were any of them judged? Nope. We accept that these are things that need to be taught and each child learns in their own time. But the kid who has behavioural challenges? That one?? AWFUL. Don't want my child in their class/group. Terrible influence. We accept that we need to teach maths and literacy but we EXPECT our children to know how to behave. Well, my child doesn't. And may never know or live up to society's expectations of behaviour. But he is hilarious, ridiculously intelligent, curious, resilient, stubborn, fun, kind, energetic and bloody amazing. He's come through an insanely difficult set of circumstances that life threw at him and he is just bossing life regardless. People couldn't possibly know that by having a brief interaction in the soft play but maybe, just maybe, they could stop being so judgemental and respond with kindness instead. 

Maz out xxxx