boys
when I look at the boys, when they are asleep, I wonder what lies ahead of us…
for now they are both at primary school with plenty of education ahead of them, but what will happen, what will happen to my little boys with their special qualities that sets them apart?
I guess I don’t really want to think about this too much, because it both upsets me and worries me.
When I was pregnant with Edward everything seemed to be correct and in order, that seems such a long time ago now, in 2 months time he will be 10 years old. It is not so much the time that has passed that makes it seem so long ago, rather what has happened to us as a family, a never-ending cycle of appointments, assessments, for one thing or another.
I have just started to read the book ‘George and Sam’, written by a mother about her family of three boys, two of whom are autistic. I started to cry barely any distance in.
I’m not feeling sorry for myself, or maybe I am, I certainly don’t want to, I know that there are children and families living with Autism in a much more difficult situation than us, but I do think why, and how, and what do we do now?
William has now been diagnosed as being on the Autistic Spectrum, whereabouts, I’m not sure yet, he doesn’t go back to his ‘schools’ until Monday, and to be honest it will be a relief, not that when there is just the two of us it is bad, because he has actually been really quite lovely the past two days. But I need to think, and plan, and decide what we need to do.
I know his school read this, and what can I do about that? Nothing.
I don’t know what this term holds, I would like it to hold a return to a full educational day for him, but I think that might be too much for some people to bear. I would like William to be happy, and learning, but again, that is probably hoping for too much.
If you are a person working in a school, one day could be great, the next day awful, you could get some verbal, or worse some physical abuse (by this I mean, a punch in the back, or scratched, not knifed up!).
But at 3.15pm that child will be collected from your care, and you can go home and not have to worry that the child will refuse to eat their tea, scratch their brother until he bleeds, and scream blue murder when you ask him to get undressed.
And in 5 years time, or less, you will never have to see him again, you will not get scratched, or punched, or have missiles thrown at you. So maybe when YOU have a bad day at work, you could consider that.
I would like to point out that that rant is not aimed at a particular school or person, I think it is something that all education professionals should remember when dealing with a difficult child.
Sorry I’m ranting, but I had to get this off my chest, maybe in the morning I will delete this, dunno.
5th September 2008 @ 7:01 am
I really feel for you, Alice. It is difficult to comprehend what the day-to-day of your life must be like, but the snippets that you present make me think it must be unbearably hard…and that you are doing a fantastic job for your boys, when at times you must feel like running away from how exhausting things are. It doesn’t sound like you are feeling sorry for yourself – I think anyone has the right to feel glum sometimes when their life has veered off down a path that they weren’t expecting, and I think it makes us all feel glum when we look ahead at our child’s life and can aniticipate hardship for them, so I can really understand your feelings on that matter! Wishing both of your boys a happy (& peaceful) return to school, and a much needed break during the day for you. x
5th September 2008 @ 8:29 am
Back to school is hard. I have a little time to myself, which is good, but I feel the stress of what I percieve to be incorrect management of Mark rising after just 2 days. And the frustration of my relative powerlessness in matters of education.
5th September 2008 @ 10:48 am
This comes with a little hug of comfort. I do feel for what you go through. I do know it’s exhausting. I do understand how terrifying it is to look into the future. I asked these questions once and a ‘professional’ I used to work with used to say that once they’re (they = autistic – but not weirdly so) are in education that doesn’t require such strict rules of you go here – you go there we do this, this way Once there’s room to allow the child to be him/herself some of the pressure is taken from the child and they begin to move forward again. They can realise their own talents. In a previous life as a programmer I used to often find myself in work groups with one sometimes two lads that had aspergers – brilliant at what they did. Just not best at talking to folk about projects etc. I guess that’s why I was there ‘cos I don’t shut up! Balance you see! But we used to get on really well! Children with autism are still children, needing love, naughty – needing to leatn the rules etc. it’s often just more extreme and they change and mature in just the same ways as any other child. Learning how, learning what’s expected. It’s just really exhausting for you all. Education professionals (not all – but some) should be taught a little more deeply about the conditions/afflictions they’re dealing with I think and to lose sight of the label, ‘cos every child is a little human being and we all have the same basic needs.. They forget about the emotional toll on everyone. Take care now! Jx
5th September 2008 @ 10:55 am
Sorry to hear you are feeling glum but I can fully appreciate why. I think September and school are difficult times of the year when looking forward seem especially daunting. I have no real understanding of your daily situation but I am in awe of your ability to remain chirpy so often and to manage so much, even with the children. I have two of my own and seem to just have a long to do list rather than things that get done. I hope your blues will soon be lifted and that the boys will settle in to their routine quickly and that the education system will prove unexpectedly helpful. Good luck.
5th September 2008 @ 12:00 pm
Alice,
I just had to respond to this. Mine don’t have Autism, but do have attachment disorder and its hard. Some days are wonderful, fantastic and a joy, and others are so so hard. You struggle to raise them in the morning and ensure they are dressed and fed by school and you send them off knowing they are probably going to have a tough day and at the end of the day (if you’re lucky enough not to get ‘that’ call) you know the teacher will be waiting to talk to you, and I stand there and not know whether the teacher is wanting me to admonish my child for something that happened hours earlier, or whether they are just updating me on the day, and then you have the rest of the day to get through, and the tea needs cooking, and there are chores to be done, and homework to supervise and battles to peacemake over and children to console – those are the days I don’t really want any words, just a hug from someone who knows and understands a little of the toughness. I’m sending you a hug. I know how hard mine can be and I dont know how mine and yours correlate,but I share your frustrations.
You are so spot on when you say about the teachers having a tough day – but being able to leave it all behind. We were fortunate to go on a course in May where every time the children did something they shouldn’t we were able to raise a flag and the social workers came over and took them off to ‘Pit Stop’, by the end of the 3 days the social workers were no longer looking so nicely groomed. They had bags under their eyes and respect in them. At the end of the course the course leader – Nancy Thomas (author of ‘When Love is Not Enough) turned to them and said – when these parents tell you that life is tough, you’ll understand a little of that now, and whilst you go home and can rest after your days – these parents carry on, showing love to children who don’t want it and can’t accept it, respect them. xx
5th September 2008 @ 3:56 pm
I understand the stresses of sending the boys back to school. My 9yo son has various labels. We had many battles with the school department and it wasn’t until we found the right school for Eli that I think I felt like I could actually take a deep breath during the day. He spent 3 yrs at a wonderful therapeutic school’s day program here in the US and it made all the difference to him and us as a family.
I hope you have a smidge of time for yourself at the end of a long day of advocating for your children and helping them navigate through their day. I feel I have a knitting, sewing, tea drinking addiction at this point and I look forward to indulging that addiction at the end of every day!
I do enjoy your blog and wish you and your boys good times.
5th September 2008 @ 4:18 pm
I’m certainly not the person to go around distributing advices but I have some opinions and some experience. I don’t have kids but my oldest brother had cerebral paralysis and he died at the age of 15. I was little and I don’t think it affect me so much directly but I saw how much affected my mother and how long took for her to be able to talk about all freely. The family help was like a hug for all of us and help this bumped road. Strengh, faith and love will help you around.
I found this post and maybe you can find someone to exchange information and ranting…
http://sew-funky.blogspot.com/2008/09/aimes-amta-facecloth.html
5th September 2008 @ 7:21 pm
Sending you a hug. Don’t worry about ‘ranting’, I hope it’s helped to make you feel a little bit better. Take care.X
6th September 2008 @ 12:48 am
i really feel this one.
i totally (as far as i can without having any children of my own) understand what you say about you taking your kids away and us not having to see them after 3pm – sometimes it is a relief to see them go. but when, as children i know have done, they hit staff and other pupils (with both their fists and objects) and hurl verbal and emotional abuse that is personal, it is extremely hard to deal with. granted, i am not talking about primary age children, nor those with autism, but (whether a child is consciously aware of what they’re doing or saying) it’s hard to bear, and is something that others don’t have to put up with in their jobs (and if it did happen to the extremes i have witnessed there would inevitably be some kind of police involvement).
i really feel for parents and families. as i said, it is a relief to see the child (or in fact children) who has made your day hell walking out the door. but to know that they’ll be back the next day leaves a rock in your stomach. how it feels to deal with the emotional turmoil and stress you described at home, i can only imagine. all i do know is that with a family as loving and supportive as yours so clearly is, your boys (and you) can only prosper. day to day, i deal with kids whose parents really could not care less. predominantly, their (the kids) behaviours are born out of a need for love and attention (clearly this is not the case with your boys) and an inability to deal with how they feel. i try to teach by example, and have my own ‘positivity’ agenda. but still, i have lost count of the number of times i have been emotionally and verbally abused. once, i was even shoved quite violently (that child came back to school, and i had to ‘deal with it’. would this have happened in a different job? i think not).
i do find it totally bewildering that you have the problems you do with the educational system. it is beyond belief that pupils with serious behavioural and attendance issues are dealt with more successfully and efficiently than those with an actual additional need.
i really hope that you find the path you and your boys need and deserve, alice. and that you find it soon. i really enjoy reading your blog, and over the last year i feel like i’ve gotten to know you a little. you have always presented yourself with integrity. just like you, i am not aiming this in any direction in particluar (especially not yours). i very well may be ranting about this (and i apologise for doing this on your blog! i think i might have written as much as you have, sorry) but it makes me sad and a little frustrated that some people have the same whitewashing views about teachers.
may i also just say, in response to some of the other comments, we aren’t always able to leave it all behind. things are often very hurtful and stressful. and i take offense from of some of the inferences that all teachers are crap at dealing with children with difficulties. this isn’t the case and more often than not i have seen exceptionally good practice. remember that teachers are human too. i think it is all too often ‘the system’ that doesn’t work.
take care alice xx
6th September 2008 @ 1:07 am
Hi Having special people in our lives can be challenging. But what get’s me through is this, I know that nothing good in life is ever easy. We grow, learn and expand the more challenges that come our way. I would love to exchange emails with you if you want. My 10 year old daughter has autism.
6th September 2008 @ 10:18 am
Hello Alice. This post came straight from the heart didn’t it? Like so many others I really feel for you. How hard it is to look ahead for our children at the best of times with all the hard bits you can see ahead for them. I really feel for you and hope the day will offer some time for you to hink or rest or do whatever you need to do xx
6th September 2008 @ 3:14 pm
Hello Alice, I’m quite new to your blog….and am really not qualified in any way (no children) to offer anything other than a hug, which I am sending you. Your post was eloquently written, and as Pipany said, from the heart. I cannot begin to imagine how difficult your situation can be day in day out, week in week out, and when you want the the best and most appropriate care and education for your children at any given time, and support for yourself and your partner. I sincerely hope you can find a way forward where your whole family’s needs are met in a kind, loving and supportive environment.
6th September 2008 @ 4:11 pm
More big hugs coming your way from me. I don’t know what to say to bring any real relief or comfort. I just know that things will improve eventually.
7th September 2008 @ 11:06 am
i couldn’t read that post and all those comments without saying something.
Alice, what comes across most strongly is the HUGE love you have for your family, you are an inspiration.
i’m not a huggy person but you deserve the virtual hugs you have recieved and here have a very british gentle pat on the back from me.
my eyes streamed with tears reading this post – it is just NOT fair .
8th September 2008 @ 11:10 am
I feel so much sorrow for you and useless to help. I guess there are good and bad teachers in every school.Some teachers my children and I have loved haven’t been so appreciated by other parents I know.So even the relationship between teacher-parent-child makes a difference. I can only imagine how hard it is to entrust your beautiful special boys into any body elses care.You must fear that the actions of others may hinder their development.
All I can say is that all children in mainstream schools need ‘special’ help in a certain way.From those who are autistic to those who are ‘gifted and talented’.It would be inpractical to think that one person could meet those needs in 20+ children day in and day out. No matter how wonderful a person or teacher they were.The problem lies in the funding for schools to provide additional help.From help for those who find interaction hard to those who need to be stimulated more.With a wide range of individual needs in the middle.
Last year I spent one afternoon a week working in my daughters class and developed a greater appreciation for what is actually involved in teaching these days.Believe me even the ‘normal’ kids are demanding and disruptive.Children come to school with all sorts of emotional needs.Lots of the day is spent managing the behaviour so that learning can happen.The teachers have many other duties they have to include in their day which would not be considered teaching. I don’t know one teacher who goes home at the end of the day and forgets about their pupils.I do know many who go home and spend hours researching and tring to find new ways to inspire the pupils under their care.
It must be so frustrating for you and I really hope you don’t think I’m having a dig because I definitely am not.
There must be some organisation involved with lobbying for more educational funding? Maybe it would be something positive for you to focus on.I know you have your hands full as it is so maybe you don’t have time.But it may help.Just a thought. x
8th September 2008 @ 8:20 pm
My heart goes out to you, I popped over from reading hazeljoy’s blog. Many of my close friends are teachers and they help me to keep a balance on my views about school, if I could homeschool I would, I do however believe the social side of education is important. I sometimes feel I am the only Mom that worries about her kids in school, does their teacher know how precious they are, how hard it is to entrust the child to someone who isn’t ME! I know a Mom who’s child has downs syndrome and he can often get quite aggressive and disruptive, his Mom tries so hard and it is hard for her, the whole school thing is a difficult thing for her to deal with, some teachers are amazing even inspiring and some find it to difficult to deal with.
I know none of these words are a help, but as a Mom I could feel the emotion behind your words and just wanted to add a little in the chance it helped.
8th September 2008 @ 8:21 pm
I thought I should add that my older son has hearing issues and I am constantly fighting his corner…
8th September 2008 @ 10:32 pm
I found you quite by accident–reading another blog that led me to you. Your post touched me deeply. I am a preschool special ed inclusion teacher and work with many children who have sensory integration difficulties or fall on the “autism spectrum”, as well as many other disabilities. I pray that my work with them makes a difference in their lives, but know that I am only there for such a short while. Families are there forever. I have an older brother who is mentally challenged and have been a part of the struggles and delights that entails. With an aging parent and out-of-state siblings, I know that in the near future, the responsibility of caring for him will be solely mine–the awesomeness of that is terrifying at times. Hugs to you!