The Black Dog of Autonomy

It's weird, often at our place. Here are some of the weird things...

After three years of battles, tribunals and general burecratic bungles, it would appear ( see how I am still hedging my bets) we have finally got the DWP to accept that Owen needs extra help.  I managed to get them to see how his Aspergers Syndrome means he needs extra support, both in and outside the home. This will really help with buying equiptment and supporting him better as he grows.

I feel exhausted, judged and more than a little humiliated but the whole darn process and utterly relieved it may be over at last....see that doubt is lingering that they will change their minds.

I am having many worries over Sam lately. He has been under going ASD assessment, we are fairly sure that he has, Sensory Processing disorder, possibly ADHD and that he too has Aspergers Syndrome. He is a very different little boy to his twin but having him with me 24/7 I can see he has specific needs.

During this process of assessment, we have become increasingly frustrated at the comments and suggestions that we are not doing what is best for him...best apparently is him struggling in school. Been there, done that and removed him due to the lack of support available for him to thrive. There is the next issue, the fact he has rediscovered his natural, interesting, charming, sociable side, which was lost during the school years. It would appear he is doing so well it is proving hard for the team to identify his issues. I have written numerous notes , had morning long meetings, and filled in various questionnaires and sheets. All the information I have provided , I am informed, points towards Aspergers ..but..you'll like this, because Sam is not is school it is very hard for them to assess him.

I cannot tell you how bloody infuriating I am finding these comments . Is it really impossible to assess a child not in school, really? Or is it that those children display such high levels of stress and frustration that it is so much easier to recognise? That would certainly be the case with my boys . I am sure if the team had seen Sam in school, these conversations would not be so one sided.

It's hard not to feel resentful and I do feel this way. Getting Sam to engage in activities is pretty hard most days, I often question and try many methods to find one that suits him, however he is learning, is now understanding more and would no longer be classed as a struggling child academically , like he once was. So why would I want to put him back into that situation, as is being suggested but the assessment team? It's not like we didn't give it our best shot. 2 schools, endless meetings, endless tears, withdrawn children , me stressed to the max...yet it is suggested , more than once.

Sometimes it feels like a thankless task. At school I was told 'there were no problems' then a list of issues would be laid before me that demonstrate there were significant difficulties. No , as we were the ones that dealt with the meltdowns at the school gates, the over stimulated children , the tears, sleepless nights, the children that could no longer eat through stress and lived for Friday nights and cried all  Sunday evening. It was deemed it must have been something we, as parents were doing, causing, imagining. You name it , we heard it all, we even did a parenting course ..which did nothing to help the children or us, but we tried, we felt guilty, a failure.

So why go ahead with an assessment for Sam? A very valid question. It's complex, as these things often are. There is an element of closure needed, also there is the issue of my ongoing health problems. What ifs . What if I got worse and was no longer able to support the children , home education became no longer possible due to my illness? Then we would have to put them boys back into school *shudder*. Even with a diagnosis support has to be fought for and can be scant or inappropriate. We already know without a professional diagnosis there will be bugger all ( technical term) provided and our parenting will be brought into question. We would have no chance of being taken seriously.

There is also that difficult but very pertinent question of wills and trusts for your child. I know this is hard for people to discuss but it's very important to ensure your child's security in the event of your death. If your child has additional needs, extra precautions , care and financial considerations, it is harder to do without diagnosis, not impossible, but best not left to chance.

So you can see there are many, many different reasons why a family may feel they need to follow the diagnostic route, even though they are fully aware of their child's issues and in the main handle things well, without the support of services


I have been thinking a great deal about Sam this week. He is going through a stage where he is not interested in my suggestions regarding activities. He is also finding it too much of a challenge to think up his own...or so I thought.

So for a few days I sat with Owen doing ( what Owen and I considered ) lovely activities and felt peevish about Sam. I did I cannot lie, I felt resentful and aggrieved that he didn't want to join it. So we reached a Mexican stand off where he began to be disruptive.

Then I slapped my own face and realised I was doing him a huge dis-service. What was I thinking?!
Sam is a very busy little boy, always on the go. He is active physically all the time and I mean all the time. Sam never merely watches TV, he watches it spinning in his Bilbo chair, or stands on his head, he's simply never still.

This week I noticed he still wasn't himself , his thumb was constantly being sucked and he was disinterested in anything but his iPad games or Lego Xbox games. I am learning, I am seeing but not always fully understanding.

I know his ASD assessment is playing on his mind, it's playing on mine too for all the reasons above and he's sensitive to my anxiety. The mention of school constantly at these meetings with 'professionals' worries him.

I decided in light of all this I would take a step back and observe what he uses to help him. It been interesting and I have learnt that this is more about, what my perception of what is a good use of his time.

I can see I am wrong . I have known deep down that Sam will be happier with a fully autonomous education for a long time. I know this works as I have seen it in other families and the children are happy and engaged. Soooo why am I not embracing it?

Hmmm...Sam and Owen do need some structure to feel secure and I have had trouble reconciling this with autonomous learning. Through thinking further, and watching him play, I can see the two are not mutually exclusive. I can also see my attitude of 'give them something to do whilst you crack on with other things' is not helping matters. They do need me to be fully present for support but thinking it through and reading about other families and how they juggle all this, everything is doable.

If I want independent learners, life long learners, I need to embrace this and not worry so much about family comments and societies Victorian values about education. That's what is holding me back if I am brutally honest.

Everything we do as parents is judged, we are deemed good or bad, no grey areas. Parents of home educated children even more so. Every politician, nosey neighbour, special needs bod loves to twist and turn what you are doing into some major failing. When the boys were in school, we were deemed a parental fail on every level according to the professionals involved.

First is was not enough discipline , then it was too much involvement and being a 'very close knit family group' ( I kid you not) , the children resented me sending them in everyday and were miserable. So you take them out and notice a massive improvement in every respect. However, this leads you open to more criticism from just about everyone you stand next to in the street. 'Are you a qualified teacher?' 'What about socialisation?', ' How do you know they are progressing?' , 'what about exams?'..if you are reading this you probably know or have heard it all yourself by the bucketful.

So I have decided to forgive myself for wanting to blend in and toe the line for a while. What I will do though is pay more attention to Sam's interests. Involve myself more. I am guilty of not being interested in his sporty side and he is incredibly sporty. More than once in football or swimming have we been told he is gifted and we need to support him more without allowing our own disinterest to cloud the issue. Having a bit of extra money coming it will make a big difference in being able to look into the gym and horse riding activities he has previously expressed and interest in.

I also need to shake of my own views about gaming and look at the positive angle that this can bring. It's hardly like Sam wants to stay inside all day, at the first mention of a walk he is out the door. Admittedly , he forgets up his shoes, socks and coat..but he has his trusty umbrella !

So I am going to shake off my shackles and listen to Sam more , currently Owen for once is causing me few worries , he's happy and engaged in many things and enjoys crafts , reading and researching a variety of things...actually Sam does too, it's just in a different way and I was failing to see it. It not just the children who are learning all the time.

Ramble on...

Just wanted to get down what this whole life, children with Autism, home education thing means sometimes. When I have a really difficult period with the family it's easy to feel swamped by the minutea of our lives and question your reasoning.

To my friends, I am glad to know all of you and am blessed to have finally found true friendship through the home educating network. You guys absolutely rock , whether we talk online or meet in person. You make me feel grounded, you help me be so much better and I learn all the time from you. 

I am also sorry because no matter how much I love to see you, we don't always get to you, or events as much I  would like. Some if this is to protect the children when they are having a difficult time, some of it is to protect your children from a stressful situation that we may cause due over stimulation. I am sorry for all the times we had to cancel, I had to rethink schedules, deal with a wrong sock situation that made us an hour late or simply couldn't get out the door due to the curved ball Autism throws our way. All the parties we missed or didn't hold.

I often feel frustrated that one doctors appointment can throw our whole week out, the change in the seasons, not having the right spoon or acoustics in a building mean meltdown city is thrust upon us and I suddenly have to deal with that. The only way I can do so is often to suddenly abandon what we are doing and work on calming techniques away from the cause of the issue. 

So to all those I left behind to stack chairs, sweep floors, dealt with stuff, I am sorry and I am glad you stuck with us.

My heart sinks when I see my boys getting so excited that I know I will be dealing with over stimulation for days...this makes me so angry sometimes. Not with the children but I wish and wish they could enjoy something with out the repercussions that follow.

Often on bad days I contemplate 'school' but it's mainly because I am too tired to think up another strategy to get through the week. The reality is school, as I know, would mean so many more issues and never being able to see your child thriving when they are with you. It's not an option but it doesn't stop me from feeling I wish there were more people to help and I could go for a poo without answering a million questions through the crack of the toilet door...or rush out mid ablution because of some crisis.

Often I worry about what people think as we leave places, Owen looking angry and shouting, Sam upset and not listening because his mind is firing off at right angles, his mouth following it where ever it is rushing to. What people don't see is my shoulders slump, whilst I wait for the anguish to kick in, as it always does. First Owen...'Sorry mum', then tears, floods of them. Next Sam ' How bad were we in there?'. Often I will pull the car over and we will talk if they are ready. I will ask what would have helped, reassure them we can sort it out, even if I haven't  yet the first idea how to do that.

A quiet period of sadness will follow, both children trying desperately to 'redeem' themselves. I don't expect this or ask for it, it seems to come with the autism territory and a depression of sorts follows them. They are aware now of more and I have to work hard are reassuring them, messaging people and looking hard at how I could of helped more, be better, be constructive. It's exhausting, going over and over it in my head, how can this be better, can I handle this situation in a different way or is it best to avoid certain scenarios for the meantime?

Then there is the home educating side, a whole other 'thing'. I know it's the best way, but it's hard. Having children who come late to self regulation and a mother who wishes them every freedom possible is a massive challenge. 

I have had to accept that too much freedom for my boys isn't a good thing all the time. They panic, they become frustrated and angry if things aren't planned. So I think, ok, I will plan, I am good at that. I have spent ages planning different educational routines and what happens? Autism happens. That non compliant side of their brains rebels against anything that someone else wants them to do. 

Ah I hear you ask how do you manage that then...bloody good question and probably the reason for my thinning hair. Still working on that one. We need lots of breaks, days off, this is what I am beginning to realise. I use the 'just 15 minute' rule' ( children with Autism love and loathe rules in equal measure, depending on who's making them). Sooo we will do this activity for 15 mins and then we can stop if you wish. 9 times out of ten that 15 mins is enough to get them locked into something and engaged. I have to have everything set up ready to roll , any waiting or delay will eat into their good will! Sometimes I have to start the activity alone and hope they will be drawn to what I am doing..they often are.

This means hours on the internet, when they are in bed or other wise engaged in Kung Fu Panda, to make a never ending list of interesting things to try. The next trick is trying to gauge what to suggest in line with their frame of mind at any given day...that sounds easy doesn't it? It is so not! Trying to laugh when it all goes Pete Tong ( and it will, often) is often hard but I am getting better at it. Sometimes one of them walking into the door, or falling off a chair can scupper the whole morning. Yes that happens a lot too...all you ASD mothers are nodding now.

The boys are learning and thriving much more and if I look beyond any current angst I can see a bright future, where before I worried. Yes I feel jealous sometimes, I do. I feel jealous of parents who can just get in the car, jealous that they probably don't have to remind their 7 year old to put shoes and trousers on 20 times before he charges out the door. That they don't have the angst over shoes, which ones, which socks with which shoes, the need for a coat in the depths of a blizzard and the millions of questions as to 'why', why, why, why! The occasions where too exhausted to have that same conversation about coats and shoes I have let them out only to be screamed at because they are cold. Trying not to feel angry because now they are really upset about something you desperately were advising against, knowing in a days time the whole cycle will start again and they won't remember . Then realising you have turned up for your doctors appointment, physio ( insert as appropriate) looking frazzled, sweaty and unable to park  your car because of the stream of consciousness emanating from the back seat. Things like 'do earwigs make chutney', ' whys that man got a big nose' and very likely 'what is that STENCH!', the phrase that follows me everywhere. Of yeah and you are wearing your slippers. 

All of the above is hard, I won't lie, it's tiring. Then there is the  in battles over benefits, giving up work to provide the best care they need and having a society that simply doesn't get you..yeah it's knackering. Watching your child struggle is demoralising and having the general public cast you as a problem sucks big time. Everyone loves to tell you what your children REALLY need, all the time, it's astounding.

However, and it's a very big word that...however. Would I put them back into school . NO! Do I enjoy having them around 'YES' . They make me laugh every single day and I admire how hard they really do try in the face if all the obstacles. They are thriving, they are very happy most of the time, they will be ok, I know this deep in my soul. Everyday we overcome another issue, everyday I learn from them as much as they learn from me. They make me a much better person than I was. Yes is painful to see the difficulties but I think I am the best person to see them and deal with them .

So much has happened in the time we have been on this home ed journey , thanks for sticking with us! Thanks for understanding every time we let you down, had to leave early and for not judging us when things were difficult.