Changes

changes

This page collects all the responses I received in answer to the question ‘How has having a child with autism changed you as a person?’ It’s a pleasure and a privilege to be able to share such insightful and thoughtful responses. Thanks to everyone who contributed.

Amber: ‘I think the even more appropriate question is…how hasn’t it changed me? Becoming a mother is this unimaginable gift. You do everything that you can from the moment you see that double line or plus sign to ensure the health and well being of your unborn child. You make these elaborate plans. You dream of a Harvard graduate that will find a cure for all cancers; of a president that will end all wars. You have these dreams and these plans and so you eat vegetables that you hate and swallow vitamins that make you nauseous. It is the beginning of the most crucial facet of being a parent…becoming selfless. Because this world is no longer yours alone.

You are going to be a parent.

As they grow older, you see your world slowly begin to change. There are these tiny moments that have you up late at night staring at a computer screen, checking milestone charts and symptom checklists. You may live in a state of “that’s not my child” or “he/she will outgrow it” for far longer than you should. You may hide at first. Hide from the people that you believe will judge you or blame you. Hide from the friends that you have whose children are so glaringly “normal”.

Since yours is so glaringly not.

But then, as quickly as the fear and isolation began, you remember what you were put on this planet to do to begin with. To be there for your child, guide them through the ups and downs, but most importantly to take pride in whom and where they are. That is what your responsibility always was and always will be as a mom and even though some of the circumstances have changed, what you wanted all along for your child has not. What you want for them is a beautiful life. The only thing that has changed is now you have you have to be ready to be much more involved in that process and at first; it is hard to know if you are ready for some of the difficult times ahead of you. What has changed is that you no longer have a choice. Even the meek must hold their chin high and carry on. Raising a child with special needs is not for the weak or faint of heart. You learn that there is no one that can stand up for your child but you. You become a voice where there isn’t one. Though being that voice will make you feel a sense of pride that doesn’t come from anything else you will ever do in your lifetime.

I think the biggest change that has come about in me is a sense of duty that is unparalleled. I do not sit around and wait for milestones to be hit or progress to be made. I study, research, and seek out new ways to teach. I went from being a parent that simply expected things from my child to a parent that was willing to put in the work and so I rejoiced each victory he had with him. I went from being a mom that ‘wanted’ to a mother that ‘did’’.

I learned that life isn’t always what we planned and that learning to roll with it and make the most of it is what really shows what we are made of. I used to believe that everything a child does is a reflection on the amount love that a parent feels or the time that is spent on a child. Now I know that the true indication of love is not caring-at all-what anyone else thinks you or your child should be. True love is felt in your heart, not seen in the eyes of your peers. I learned that my dreams were never his to begin with and letting my idea of who he “should be” go was a freedom that most parents may never know and for that, I am eternally grateful.

I have become stronger than I ever thought possible and braver than I knew I was capable of. I became someone that knows when to stand my ground as equally as I know when to bite my tongue. I truly became who I have always wanted to be.

And I owe that all to my beautifully perfect, imperfect son.’

Journeyintothespectrum.wordpress.com

Mr C’s Mom:

How has having a child with autism changed who you are as a person?

Tough question, but I actually have time to reflect upon this, as I sit here at home on my sick leave… from stress related to our son’s latest development: extreme tantrumming. Don’t worry, we’ll get through it. Always do :)

He was diagnosed a week before his 3rd birthday, back in 2005. A surreal experience, really. Like a bad dream and you keep waiting to wake up. Then the intervention years. ABA, applying/begging for government funding, baby daughter under the autism microscope for 2 years, biomedical interventions, more behavioural interventions (Floortime, RDI), remortgaging the house to pay for everything, and then not a cent left to spend on any more intervening.

He’s going to be 11 in May. He’s adorable and has the best smile and freckles ever. I know I’m biased, but I’m also right. He speaks in incomprehensible riddles and even his own made up language. Repeats the same phrases over and over, the latest being, “You got an orange walrus.” Very difficult for the passerby to come up with a response to that conversation opener.

When he’s clear, he can answer some very basic and tangible questions like, “Do you like lollipops?” … “Yes!” … or “Where do you want to go?” …. “The mall store.” or “The lake.” He is addicted to water. Spends hours dunking cut up plastic toys in creeks, lakes, sinks, basins, bathtubs, and yep, toilets everywhere.

When he is content, the family is usually content. But when he is upset and raging, well… there’s no ignoring it, really. Glass gets smashed, appliances get dented, pictures come off walls, doors get mangled, shins get kicked, and lots of tears flow.

So how has this changed me? Well, I like to think for the better. When I don’t feel sorry for myself (I try to confine that useless emotion for only 1-2 times per year), I am more optimistic about the future than I was when I was a teenager and also when I was in my 20s. I am way less cynical and more forgiving than I was in my late 20s and early 30s. That’s pretty good, isn’t it? I am hopeful for new developments, but also grateful for Mr. C’s current abilities, his affectionate ways, his forgiving nature, his inability to lie, his trust in his mom, dad and sister. He can ride a bike and climb any tree (or fence) and will excitedly wade into the coldest water for a swim. The look on his face is pure joy.

He’s different. I’ve always liked different. That hasn’t changed.

Thanks for reading!

Lianne:

I feel that I have become much more patient, not only because for my son I have to as he needs extra time to process information he is receiving, but also since I have learned how difficult it is for him to understand the world he is living in.

I have learned that just because I, or someone else, just “get it” that he will not always necessarily too just get something. Infact nine times out of ten he doesn’t, and if you check something out that seems really really obvious it’s sometimes amazing to discover that he’s not “got it” and it’s fascinating to hear how he has infact got it…
Such misunderstandings as these happen on a daily basis, and I feel that I have changed by really slowing things down. I must help him to keep up, and understand what’s happening, and if I don’t he will not keep up and perhaps be confused by a situation or conversation which seems “obvious” to a non ASD affected mind.

Here’s an example. Social norms, and unwritten rules. Why wouldn’t you call an old lady “old”. Why would someone be joking if they are not laughing. Why would you not give your parents back money from your own money if they have bought your tea. Why do you have to call people titles such as mum, dad, gran, aunty, etc when other people call them by their first name…

The school environment is the most challenging, as you’re up against several teachers who unless they are trained in ASD, they don’t understand how their minds are working. For example, why would my registration teacher keep on yelling at me about being late; “Why are you late this time, I don’t want to hear your excuses!” When it’s not an excuse, why would they keep on saying it was excuses and continue to be angry?

Quite often people suggest that it is bad behaviour, and look for me to discipline him. If he does not understand a social norm, then how can he be able to be malicious and manipulate it? Most of the time I am able to use this new found level of high patience, but I must admit I am getting less of it for people and their sheer ignorance.

Life for us was always in the fast lane. I have always been of the opinion that he needs to be active and he needs to be meeting people and he needs to be out there in clubs and activities… And all the while by pushing for this I was actually causing an overload on his arousal levels which was in actual fact cruel. Life has changed and we are much slower now, and my son copes with not much more than his extremely packed day at secondary school.

Many thanks!

Beth:

I am the aunty of a very amazing little boy with autism. I sometimes feel like an imposter in these situations as I am only the aunty. I do not suffer the sleep deprivation and nitty-gritty everyday struggle that you guys do…. but I am very close to my sister and could not love her children more if they were my own. I make sure I see them at least twice a week and I am as involved as I can be in their lives – I do all I can to support my sister and soak up as much information as I can to be as much help as I can. Therefore, whilst I am not a parent of an autistic child – I am immersed in this life and have been hugely changed by the goods and the not so goods of autism.

I started following your blog some months ago and suggested my sister and her friends (also Mums of fab little chaps with autism) also follow you. They all do and have been encouraged and calmed by your posts. They have all been pondering your question last week in how this has changed them as people and as I have listened to them journey back to a life before autism I have found myself wondering the same thing.

I think that the most overwhelming change came with my realisation that I was so ignorant of anything outside the NT perspective before we sought diagnosis. I thought I was open-minded – boy was I wrong!

Our little man is 3 and a half – my sister has her own Montessori nursery which has a wonderful local reputation – especially with children who have additional needs – she knew the signs and sought diagnosis before he was 2. I fought hard – everything she was worried about was an inherited trait to me – I saw so much of our Dad in him – I just thought he was like his Poppa. A year and a half on in our journey and I have come to realise that he is just like his Poppa – what I now understand is that his Poppa was very likely to have been a step or two up on the spectrum himself (mind you… I now believe we are all on that spectrum somewhere but that’s another rant) I was so resistent at first – I am ashamed to admit that I was that person who thought autism meant Rainman. But I quickly came to see it wasn’t about me and what I thought – it was about him and it was about my sister – what did they need?

They needed me to understand – to learn as much as I could – to support to the best of my ability – so that is my goal. I have joined many support groups and forums and have been amazed by the open kindness I have found. I learn so much everyday that what has changed about me becomes more and more changed each day.

I think because our diagnosis came a little while before London hosted the Paralympics this also provided a catalyst to my shift. All at once I was being exposed to the amazing talents of people in the face of what I considered a disability. I do not see from this angle anymore. I am differently abled to my nephew – and we are both differently abled to the athletes we watched this summer – but we are all equally important to society as a whole. I do not feel pity anymore when I see someone differently abled to me because I now understand that I have no idea what they ARE capable of. Before I saw what people couldn’t do – now I only see the potential of what they could do – of course some may need more support than others to reach their full potential.

I no longer judge people by the behaviour of their children or judge adults by what I may have considered odd behaviour in the past. I visualise the spectrum as a rainbow – and when I meet people now I enjoy learning what part of that rainbow they are walking on. And that is an amazing way to meet people.

I believe that education will have to change to meet this myriad of needs – I believe education will need to split into channeled schooling. No longer NT schools or unit placements but NT schools, ASD schools, schools for children with physical disabilities but no mental issues… you get the picture ;-) (idealistic maybe… but it will have to be this way in the future) ASD should not be treated as a disability – who are we NTs to judge – I am so open to the fact that my nephew is going to be capable of so much more than me – our job is to give him every chance to get there. It has made me see society as a much more varied multi layered enigma and we will have to educate appropriately in order for us to reach our potential as the differently abled mass that we are.

So…. autism has definitely changed me and changed the way I look at life and the people I meet. I am much more open and less judgemental and the world seems a lot bigger and far more interesting – and of course the greatest gift of all that autism has brought to me in the supremely amazing little creature that is my nephew – the entire person that he is has taught me that I can love someone this much.

I once again humbly acknowledge that I do not live the bad days that parents do – I do not have to make the tough decisions about school, I do not deal with the 3000th bottle of shower gel being poured all over the floor for the 10th time that week, I am not sleep deprived and I am not kept awake at night sick with fear for my child’s future. Of course, I wish that this beautiful boy didn’t have to face more difficulties than most children – I hate that my sister lives with the worry and exhaustion that I cannot take away from her and I wish I could make things easier for them. I wish the world was a kinder place to differences…. all I can pledge is that I will continue to embrace the open-mindedness I have found in myself – I will give support to this community and help to raise awareness – I will do all that I can to make the world kinder – person by person. And I look forward to spending the rest of my life learning how to understand the heavenly intricacies of his beautiful mind and soul.

I have rambled I know – I apologise… I do know my place in all this – I hope that perhaps my feelings might serve to show that family members can embrace this with all their hearts. We want to help and I hope parents might be comforted to know there are those of us who love your children deeply and who will be prepared to help make the world more aware. I might not be there to administer the melatonin but I will talk to everyone about it so people understand why you may choose to use it. I will talk openly about meltdowns so that my friends and colleagues may choose to see a distressed child in a different light next time they are stepping over a screaming 3 yr old in aisle 19 at Tesco – and if those people all tell their friends and if those people tell their friends……

Thank you for your ear.

All the very best.

Beth

 Ackers72:It took a long while to accept the diagnosis that was given to my son, probably because I didn’t understand fully what Autism/ASD/Aspergers was. A great friend works with children and adults with learning difficulties and has helped so much with me learning what it means and how it affects my son and me.

It seems as soon as you mention Autism people automatically think ‘Rain Man’ and maybe the film did brought to light misunderstood behaviours but it’s so much more than that. Without my friend I would still be struggling to come to terms with it all but now because of her, me and my son have a fantastic relationship and I embrace the differences that he has from other children. We incorporate lots of plans, strategies and focus on what we enjoy doing and using that to try teach my son while he plays. We go away many times to many different places and even though at times it’s difficult we both learn from each other, learn boundaries of behaviour and how behaviour changes those around you.

Its been a long road but the journey along it is continuing and getting more interesting. My life has changed for the better in that i accept and understand there are many different ways we can all learn not just people with A/A/A and that my sons time with me is far more important that anything else I could possibly do.

Michelle:

There have been two threads of change for me since we became aware of our son’s disability. One is practical and has been very difficult. Not being able to work (much) has totally put us on the back foot financially. We are miles behind our peers in terms of financial security and will continue to be. Also as a family we are very restricted in our activities (we have two NT children as well). I become more aware as the kids get older how intrepid other families can be and how spontaneous. My other kids miss out on a lot and I worry they’ll get more resentful of that as we go. It’s not that we don’t do things – the ASD is relatively mild – but we long ago gave up cafes, children’s theatre, biking, noisy places, anywhere you have to walk more than 10 minutes and of course as adults we hardly go out as babysitters are hard to come by.

The other way I’m changed is emotional and its a much happier story! Despite the sadness, particularly around diagnosis time, its been a time of huge growth for me as a person. I have totally turned around the way I look at parenting my children. I’m so much more open-minded. I now pity those who are obsessed with exam results and thrusting careers for their children and I’m focused on the ‘happy’ which is such a good place to be. I’ve also met some really inspiring people in this ‘other’ world and hopefully will continue to do so. My son’s differences have set us apart for sure, but I don’t see it as a bad thing, but a hugely enriching thing.

I’m very lucky.

Sarah:

Where does one start?

I am stronger now than when my daughter was diagnosed back in 1995 – L’s paediatrician didn’t recognise me a couple of years ago when I turned up at a meeting, advocating for another parent who’s child was having problems.

Never in a thousand years would I have approached the head of children’s services at our local council before my children were diagnosed – no way!

Finding new ways to do things and appreciating the quiet times have become so important.

Before the children were born, the idea of a five point plan and a multi-disciplinary meeting to give L a blood test would have been laughable.

So now both children are in their 20 s and the light at the end of the tunnel is blinding me, you would imagine that we’d be sitting on our deck, a glass of something chilled in our hands?

Well you’d be wrong, we’ve just signed up to be foster carers with our local council, specialising in – yes you’ve guessed it autistic children!

Having autistic children has changed us, dramatically and I hope for the better – but and this might seem contrary to everything I’ve said and I asked the children – if there was a cure, would you take it? We all agreed that 1. I would have given it to the children at diagnosis 2. They would take the cure now if there was one and 3. It has been a long and difficult road!

The last thing I’ve found is that I have absolutely no filtering system now and I’ve lost my ability to chat about inconsequential things like the weather or Kardasian’s shoes (whatever the heck Kardasian is, thought they were a member of the Star Trek universe!).

All the best.

Steph:

How has having a child with autism changed you as a person?

Or, phrased another way, does parenting a child with autism change who you are? Or does it change who you may have become?

To understand the changes, you need to know what came before. Before children I would have considered myself easy-going, a ‘sit-on-the-fence’ kind of person who liked a quiet life and hated confrontation. I was extremely lucky with my lot, and coasting along nicely, thank you very much. I wasn’t even sure I wanted children originally – I never felt I had that particular maternal instinct, wasn’t sure what I would do with children or how to ‘handle’ them. I had a great life, good jobs (yes, definitely more than one…), plenty of holidays and work trips abroad. Of course I can pick some of the points out of the list below, and say that everyone who becomes a parent would say they are now ‘more tired’ for example, but in that case you can read ‘More tired….and then some’.

Now, I am:

  • A whole lot more knowledgeable about Special Needs, but still not even half way there
  • More stressed
  • More determined
  • More patient
  • More aware of others’ needs
  • More flexible – but mostly with relation to our ASD girl’s needs
  • More understanding
  • More aware that you never know what problems other people/families are facing
  • More tolerant
  • More paranoid about what others are thinking
  • More busy (I think ‘busier’ may be grammatically correct, but it didn’t fit the list smiley emoticons )
  • More tired
  • More emotional

I am also:

  • My child’s greatest advocate
  • A fighter
  • An expert form-filler
  • Keen to spread understanding of autism in any way I can
  • Less judgemental
  • Less bothered by what others think (I know, I know, that’s contradictory)
  • Often in meetings concerning my ASD girl
  • Getting used to the rollercoaster that life has become
  • Less likely to take time for myself
  • Less likely to eat out in restaurants – something I’d have loved to do with my family
  • Working with a company who provide help to families of children with ASD/ADHD
  • Wanting to help other families who are realising their child is different
  • A keeper of lots of files and paperwork that I never imagined I’d have
  • Keenly aware of how autism affects the whole family, particularly siblings
  • Extra especially keen to make sure I am doing the best job I can with my non-ASD child
  • Constantly thinking about the future and about how we can make it the best it possibly can be for both our children

My blog has been an outlet of thoughts and hopes from the start; a way of letting others know how it really is, a way of trying to increase understanding. I am fairly sure I’d never have started this blog without our diagnosis of autism, so that is another way in which I have changed. Just think of all those TV programmes I could have watched instead of sitting here typing away! I’ve found such a huge great support network through blogging though, and for that I’m very grateful.

stephstwogirls.blogspot.co.uk/

Jessie:

It has completely changed how I feel about work – my drive has vanished. Or is it that I just can’t concentrate on work any longer? i don’t know. I sometimes feel that the last time I did a proper day’s work was the day before I first hear the word linked to my son two and a bit years ago. (Does this change?)

I also think it’s created a small distance between me and some friends who just don’t understand what I’m talking about. (some don’t seem to believe he has autism – that he’s being “labelled” negatively. hmmm). Unless you’ve been through it, I’m not sure people really understand what it’s like to have a child with communication delay, with whom you can’t fully engage. How limiting reduced eye contact is in a relationship.

It’s also made me a bit angrier – particularly when I think how children are being failed – and more thankful for small victories. I think it’s incredibly hard to explain what it’s like to be an autism parent, something you do so well B’s Dad.

On the upside, I think also it’s forced me to change my parenting – for the better really. You can’t be complacent with an ASD child can you? I’ve had to invest more time, energy and a lot more money. And I’ve met some unbelievably wonderful people – fellow parents who I feel an instant closeness with.

It has strengthened my faith but also tested it to the limit. It has changed the very way I live my life. It has brought my husband and myself closer but also rocked our marriage at the same time. Although we had years to build up to the diagnosis the day itself still hit me like a brick. So here’e some of the ways I have changed since becoming a parent of an autistic child (in my case autistic twins at both ends of the spectrum):

– a deeper love for those in society who just don’t ‘fit’
– much more determination to fight for what is right and defend a child who can not defend himself
– I have become a reader and researcher of a subject I once knew little about
– I have come to live off less sleep than I ever thought possible
– I have learnt the true meaning of friendship. Some friends can understand you without ever meeting you in person
– I have learnt to gain joy from the simplest of things
– I have grown back bone where I had little before
– I have changed from a person who never cried in public to someone who can shed tears in front of anyone at any time.
– I now truly believe in miracles because I have come to depend on them.

I also blog about my children at http://www.faithmummy.wordpress.com

I guess it depends if you want the inspirational stuff or the ugly truth, the stuff I think and don’t share so much. Friends say I am exactly the same, even though I spend my time caring for my children now, instead of partying. I don’t know if that is a good or a bad thing. The only thing I think that has really changed is that I try to live in the present and enjoy each day as much as I can.

http://www.lookingforbluesky.com/

Al:

Having a son with ASD has challenged my view of the education system and what inclusion means to me. I struggle with how things are and how I think things should be, and my role in this. How much do I accept and how much do I challenge?

ASD Dad:

Having a son with autism has changed me in many ways, but one fundamental shift is in the way I prioritize my life. Whereas in the past it was easy for me to get sucked into obligations minor and major, often at the expense of myself or my family, now the path is much clearer: my son comes first. In a way, it’s made life easier since life decisions are more clearcut: will this help or hurt my son?If the former, then we do it; if the latter, we don’t.

Accompanying this re-prioritization is a general realignment of expectations. I had visions of family vacations, dinners out, movies with my boys. I still expect and hope for those things, but I know they are going to be much different than what I’d imagined prior to getting an autism diagnosis. And, for the most part, I’m okay with that. Except for when I’m not!

http://www.asddad.com

Clairee Elizabeth It has made me think more about society and societal views. It has made me more aware. It has made me eat more and gain weight! It has made me sad but determined and it has shown me true love

Cyndi Marcus Richards Having a child with autism has opened both my mind and heart. I’m more patient and understanding and less judgemental now x

Anita Higgs It has taught me patience & compassion I didnt know it was possible to have. It has taught me unconditional love and to be less judgemental. I have met some amazing people who have worked with my son and have realised the importance of having friends who accept me & my family for who & what we are. And of course having a group like this is invaluable. There us so much support & you never feel judged or “the odd one out”. I have never met anyone on this group in the flesh yet despite this I feel their pain & feel that I know some of them.

Arlene Graham It has made myself and my family look outside the box, we try not to see what he ‘can’t do’ and encourage what he ‘can do’. Always looking for new ways and strategies to help him cope with what seems an everyday situation to most. It has taught us all not to be so judgemental if a child is having what most consider a ‘tantrum’ in the shop or street and think beyond what we see with our eyes. I’ve also learned that although he can sound vicious and hurtful on his down days, not to take his words to heart because he does love me in his own way although he can’t express it in the way others can. Most of all I’ve learned that he and all kids alike are worth every moment we spend on them as how we treat them as a person and an equal is lifechanging for them. ❤ <3<3 my boys.

Dawn Catherine Dwyer To be honest it has devastated our family. My son was dx at 10 yrs. Aspergers/OCD/Mixed Anxiety. Just before dx my husband and his father (who also shows a fair sprinkling of AS) divorced. And my daughter moved out, she being my older child from a previous relationship. My son has specific phobias that are very isolating for him and me as his sole carer. Im 46, have no social life, my son is very forgetful and cannot be left for more than an hour if he is awake or likely to wake up soon. We never go anywhere or go on holiday. l am trapped in the nightmare of the benefits system as i cannot work and need to be with him most if not all the time. He gets out of the house about once a week, consequently he has a weight problem and at 17 is very unfit. His only conversing with the outside world is his XBox `special Interest` veering on obsession. The future is bleak. I try to get `on with` my own life but it is difficult when you have little money, no job, no friends a small family and an ex (his dad) who pops in for litterally 2 minutes a week.

I find that the actual Aspergers `bit` of his dx is OK to live with for both of us, its his phobias that kill our social life that could help him with lots of other interactions. I have even asked if hypnosis is available on the NHS. Just to try and live without his one particular phobia for a while, and see if he could then appreciate life without feeling anxious-enough for this to change his thinking. I try to daydream myself into his world and his emotions and his thinking and i try to reason it all out. I fail as i expect i will every time. Unfortunately he lacks the empathy to do the same from my NT perspective.

Tracey Harrison It has made me realise how complex the whole spectrum is. Not just in the sense of ASD but with all the co-morbid conditions that make the condition even more complex. My son has Turette Syndrom and OCD. When his ASD is not managed properly his OCD kicks in big time to help him find some control in his world. But as he is autistic he has no ‘brakes’ on his OCD behaviour, so insread of finding comfort in hand washing/checking rituals he listens to the compulsions to set fires, mess with electrictiy etc.

Hayley Thomas In my brutally honest way it has changed me as a person not that iv ever been what u class shy !! But I am now outspoken knowledgable and will question professionals. I trust no1 and live 4 my family. I find support lacking in all areas education and health I find ppl judge me daily and I hate most ‘muggle’ families !!!it has also showed me whole new world and me and my lil family could b no closer spesh as 6 year old can’t stand ppl we r kinda prisoners here ! I have met other amazin life long parents thro groups like this. I can ‘spot’ asd with my radar and now understand a lot more than I did b4 this journey when I was an ignorant muggle mum. X

Tracey Harrison Like the ‘muggle’ term! Cos unless you’ve lived with it, you’ve no idea. The other thing I’ve noticed is with siblings. Both my son’s siblings are described by all their teachers as kind and tolerant, treating everyone the same and not saying unkind things. I’m sure this is because of their expeience with their brother. x

Tracey Harrison My youngest definitely has traits, and he’s going to find life difficult..but I think he will be one of those classed as a ‘geek’ which is becoming a bit more acceptable now! He’ll find his niche but until then we’ll cope with the tics and the obsession with numbers and the saying whatever is on his mind and the lack of imaginative play…!!!

Mary Sutton I was diagnosed a year after my son. THAT explained a lot! What it didn’t prepare me for was how SOME people would automatically judge you for being autistic, but then fail to offer you any support.

Alan:

I have a son who has been diagnosed as on the spectrum, and most likely has Aspergers. I can relate to your article on B and your coming to terms with his ‘disability’ and the ignorance of others.

Anyway I would like to contribute to your next blog on how my ASD child has changed me. So here goes.

My name is Alan and I am 35 years old. My son (let’s call him R), is almost 5. I have a younger son of 3 and the first time I knew there was something wrong was when we thought our younger child was a super baby, advanced beyond what we had seen before. What of course was true was that R had not advanced as he should and was behind his peers. Even as a small baby he would push away from being cuddled, did not like baths etc etc and has never slept!

Over the last two years we as a family have faced such hard times through living and trying to cope with our sons disability that both my wife and I have had breakdowns, lost our jobs and almost our marriage and are now both on medication just to get by every day as well as now facing bankruptcy.

Through all this however I have gone through a journey of self discovery, an understanding of the way the world really is. I now also do not fear death and will embrace it when it finally arrives, I know now why they call it being at peace.

I was brought up to believe that you went out to work, provided for your family and tried to be the best person you could be. Having to give up work and being so sleep deprived that often I was a monster to have around made me feel I had failed as a person, partner and parent. But I now feel I have a true view of the world and not some suger coated spoon fed version. Life is hard, life is most often suffering. Those who cruise through it without hardship do not truly appreciate its beauty. I now cherish the small moments I took for granted. The hug from R that comes so rarely but means so much. The evening out with my wife that is about twice a year. Truly knowing who my real Friends (and family), are. I also now hate Christmas with its over indulgence on all things bright and exciting. For a family with an ASD child, Christmas is torturous.

So I guess you could say my ASD child, my beautiful R, has taught me more about life in 5 years than I knew in the previous 30. I also no longer view death in the same way I used to. I hope this is something you can use in your blog and I haven’t gone on too much. Please excuse any grammatical errors, I only get on average 4 hrs sleep a night.

Keep up the blogging,

Alan.

stefzad:

I feel in many ways I’ve dropped out of life as I once knew it. It’s hard for me to have a conversation about anything without somewhere mentioning my son. I have to bring it up at work to explain why I can and can’t travel, meet deadlines, do things most people in my professions would jump at. I bring it up socially to (hopefully) ward off listening to parents prattle on about what i now see as inane worries.

On my zen days, I realize that having a son with ASD (I’m ASDMOM- married to ASDDAD) has given me the golden ticket to avoid the temptations of superficiality. I have to exercise so much patience and compassion on a daily basis (with C and myself) that I’ve been changed irrevocably.

That said, other parents can and often do fill me with rage. I would not survive this had I not found a group of other Spectrum parents with a penchant for black humor. If I didn’t laugh with them from time to time, and rage, I wouldn’t be functioning right now.

8 Responses to Changes

  1. Pingback: Changes | Life with an Autistic Son

  2. Pingback: How Has Autism Parenting Changed You (Part One)? | Life with an Autistic Son

  3. Pingback: How Has Autism Parenting Changed You (Part Two)? | Life with an Autistic Son

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  5. Pingback: How Has Autism Parenting Changed You (Part Four)? | Life with an Autistic Son

  6. Pingback: How Has Autism Parenting Changed You (Part Five)? | Life with an Autistic Son

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  8. Pingback: How Has Autism Parenting Changed You (Part Seven)? | Life with an Autistic Son

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