What changes would make my life better?

Today’s blog post is prompted by Brit Mum’s question, what changes would you make in your personal life that would make life easier, better or more joyful?

There are many changes that are needed to improve my life at the moment.  Most of all I would love for my autistic son to be happily settled into school once more and for my aspergers daughter to be understood and supported by her school.  If I could achieve these things for my children then it would not only have a positive affect on my children but also for me personally.  I would feel less stressed and worried about their education and future and I would have more time to be me and to do the ordinary ‘mum’ things. 

As it is, it feels I am a long way from achieving those things as much of my time is spent helping and advocating for my children.  I don’t resent doing all I  can for my children and indeed I have learnt a lot through the process but what I do resent is that the education system has failed to support my children which has exposed them to low self esteem and mental health problems.  Equally worrying is the thought that my children are at risk of unemployment and poverty in adult life.   

It sounds ironic that education that is supposed to empower people and provide the foundation for a good life is actually doing the opposite in our family.  Not only has it made my children’s disabilities more acutely felt, it has also changed my life in ways that I never expected when I first became a mother. 

Back then, I never imagined that two of my three children would be diagnosed with an autistic spectrum disorder or that my children’s education would be worse than mine.  Neither did I imagine that I would be forced to give up work to care for my son.  Instead I expected at this stage of my life to be back in work and enjoying a slightly easier time, free from the challenges of those early years of motherhood.  As it is, I spend my days at home, supporting my autistic son and trying to help him overcome his fear and anxiety that is stopping him from attending school.  It is a frustrating situation to be in at times and often I feel at the edge of society looking on as other mums I know start to return to work or do other things now that their children are settled at school.  If I sound jealous, I don’t mean to.  I would never deny others the chance for them and their families to do well or to be happy.  I just wish that my family had similar opportunities.

This is why, for me, the biggest change I would like is for my children to be happy and settled in school and enjoying the same opportunities as everyone else.  With that change, my life and that of my family would improve so much.

This post is day 14 of the nablopomo challenge.

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8 Responses to What changes would make my life better?

  1. Deb, I can only imagine how hard things have been for your entire family over the last few years. I am only at the start of the journey with my son ( and possibly my daughter too, as she grows more ‘ quirky’ by the day) and I have shed so many tears, spent so many sleepless nights just ‘ thinking’ how to improve things and fought back the need to scream in school meetings where teachers ( and ed psych) refuse to see my son’s challenges and are now arguing it must all stem from home ie. it is all my fault , mine and hubby’s parenting or some change in his home life he struggles to interact with his peers if he does so at all, doesn’t sleep, is perfectionistic, routine driven , obsessive and a suffering from terrible sensory issues.:( I have never felt so worn down, exasperated, unheard and desperate. So I can’t imagine how you must feel after years of this experience. My heart goes out to you all. My heart tells me I should seriously consider home educating, my head is saying i can’t support my children’s social needs this way and nor should I have to. Already the education system is failing my son and he is 4 years old. I think i will be a shell of my former self if I am still in this predicament after the years of battling you yourself have endured. Beth x

    • Aspie in the family

      Oh Beth, I really feel for you. In my opinion the reason why many people are blaming us for our children’s behaviour is that they are ignorant of autism and aspergers. Its easier for them to blame us than to admit that they are not knowledgeable. Sorry if I sound cynical but the current climate of negativity over parenting only contributes to a generalised assumption that parents are incompetent. In my experience I felt I was in the middle of a power battle between professional and parent which I detested. I would love to see parents and professionals working equally; I mean as a parent we are the experts on our own children and what we say should be respected and listened to but often it isn’t. But I fight back and I challenge them with my understanding and knowledge of my son and his autism. That’s all I can say to you is to stay strong and keep fighting but get support where you can, you know from organisations such as the NAS or IPSEA.

      I know what you mean about home educating. I had thought about this myself but my son is resistant at the idea of education in the home and in any case I don’t think this is the right way. I want my son to get used to other people and life outside the home and not depend on me for everything. In any case I think the state has a duty to educate my children.

      It is tough Beth and sometimes I feel I never come to the terms with the failure of the state to provide for my children but we have to fight on and share our experiences so that future generations can learn from us. As someone on twitter once said, we are pioneering parents. I rather like that.

      Take care. Deb x

  2. Oh Deb, I felt as if parts if this post were written for me! I always thought we would be a “normal” family too, and I just assumed my kids would get on fine with school because I had. Some day someone will realise that not every child thrives in these huge schools that are so popular these days. Not every child copes well with being one in 300 (or one in 1800 at our secondary school), or with being restricted to the company of people of their own age. Why should they – not all adults like this? These huge crowded high-pressure environments just emphasize that a child is different, and make any struggles horribly public. My son is definitely a square peg in a round hole, and I hate the damage this bad start has done to his self-esteem.

    • Aspie in the family

      I agree with you about the physical environment of school. It disappoints me that many people assume that large buildings are where our children should be educated. I guess they’re built like this to cram the masses in and to save on resources but many children don’t thrive in these environments, particularly our autistic children. But I also think its the same in colleges and workplaces; some of the buildings are so overwhelmingly large and noisy. Deb x

  3. It seem such a simple thing–to have our kids happy. I would wish for that as well. I can do without just about anything (OK, I’ll still keep my coffee) but to have a happy kid? I’d take that in a heartbeat.

    • Aspie in the family

      My mum always used to say happy kid, happy parent. I didn’t realise how true that was until I became a mum. Deb x

  4. What a great post!
    I guess a lot of us don’t understand the extra difficulties faced by the whole family. I can’t imagine how it feels to see the education system (your in the states right?) fail your children, I’d be devastated.
    Thank you for sharing your experiences on your blog and opening this new young teacher up to the autistic spectrum in so many ways.
    Hellie x

    • Aspie in the family

      Thanks Hellie. Its great to hear that my blog helps others to learn a bit more about the spectrum and family life. I think you are right; so many professions fail to see how autism impacts on the wider family. You know, I’ve had to give up work and whilst I would do anything for my children, giving up work due to the state of our education system is not something that should be happening. I live in the UK by the way. Deb x

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