Psychological Damage Caused By Using Government Disability Support Services

Before I was a mother of an autistic child, I had certain presumptions about the services a family like mine would be entitled to. I thought mothers who had to quit their jobs to look after their high needs children full-time would get a benefit that would cover basic expenses, similar to what you might get from an unemployment benefit. I was wrong. I thought schooling support would be automatic and cover the child’s basic needs. I was wrong. I was wrong about a lot of things, and yet somehow it still manages to surprise me when I encounter major short-falls in a system that is supposedly in existence to help the neediest members of society. This post though is not about that short-fall in itself, it is about the damage that gets done to those who have to access and navigate the system, in order to squeeze out inadequate support and services. It is about how different I have become over the past eight years, and how I feel a fair chunk of that personal change is thanks to the way the system is (poorly) run.

Free use image

“Broken” (Free use image)

I am not OK. I am stressed, often depressed. I am sleep-deprived. I have high anxiety. I am fragile. I feel broken. As hard as it has been being a mother of the children I have, that job has been made so very much harder by the government’s systems.

From the first day you reach out for help with your child, it’s like a highly judgmental never-sleeping set of eyes enter your life. They first assess whether the child’s problems are all your fault as a faulty parent, and when they decide the problems are real and exist independently, you have to maintain perfect parenting as therapists and social workers and educationalists and bureaucrats breeze in and out of your life; taking notes, comparing you to “the average,” measuring your actions and words and emotions.

I learned that if I showed them my anger and frustration about the lack of services, I would be stone-walled and put to the back of the queue until I could behave myself; if I showed them sadness and despair then the services for my son would be placed further down in priority and attention would shift away from him to me no matter how much I insisted my sadness was because I needed his services in place, again putting his services on hold; if I showed relaxed calm or happiness I would receive comments along the lines that my family seems to be doing fine and maybe we don’t require the level of services we’ve been receiving anymore; if I showed a stone-face of little emotion then there must be something wrong with my emotional connection with my child and again the focus would shift unhelpfully and incorrectly to me.

Over the years I have been forced to tightly control my emotional, facial, and body-language interactions with the government employees to keep them focused on what matters and why they are in my life – to get my son what he needs. I have learned to smile a little and appear confident, but not cocky or too sure of myself, I control every aspect of who I am when I have to deal with these people, and it is mentally exhausting.

That exhaustion can become overwhelming. If I have a visit due from the local Needs Assessment Services Coordinator, or an IEP, or any other government-funded visit or assessment or phone call, I find myself completely wiped out for the rest of that day. So much rides on saying the right things, in the right way, and making myself appear right to them. If I screw it up then my precious sons face the consequences of my failure, and I can’t be OK with that. I have to get it right – make it look right – even if it ruins me.

I have become so used to the exact precision required in filling out forms and applications to first get and then to retain government services and support, that it has enhanced my already unhealthy inclination towards being overly detailed-obsessed and a perfectionist. The time and cost involved in getting it wrong, can be of such significance that it makes sense to obsess. That plus the feeling of always having the government watching and judging, plus the need to tightly control my emotions and appearance when interacting with these people, and none of this is healthy for me.

I have been shaped into what they want me to appear to be: In control and calm. I feel like I have to be the background noise of my son’s life just to keep their focus on him and not me, I have to play my role as defined by them to make sure they play their role. Through it all, after years of this, I am feeling utterly shattered, but I am extremely good at putting on my mask and getting through my day. My son is doing so much better now in his life, he is doing fantastically and I have so much hope for his future. But me? I don’t have so much hope for me or my future, and I’m not even sure who I am anymore. I know I shouldn’t talk openly about how broken I am in the autism community either, because every time one of my many autism mum friends speaks out they get loudly attacked by other members of the autism community who consider their honesty and emotions to be irrelevant or inappropriate when all the focus should be on the child. It just reinforces for me that my own experiences and emotions aren’t important.

Say the right things, look the right way, smile at the right times. The child always comes first, the mother is a back-drop.

So yeah, I’m damaged. My son’s autism wore me down, then the government came to help and hurt me worse in the process. I want to say “it was worth all the heartache and headaches to get my son where he is today,” but I just don’t think it had to be done that way. There must be a better way to run the system, that doesn’t crush the people it’s meant to help. This shouldn’t be OK. This isn’t OK. I’m not OK.

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106 Responses to Psychological Damage Caused By Using Government Disability Support Services

  1. Agreed. It gets really frustrating and sometimes I feel like giving up.

    • I’m so sorry to hear how many people are going through similar emotions and experiences as I have been, it shouldn’t be like this. Thanks for sharing how you feel karleighjjones.

      • Hayley Walker says:

        I have just seen this, having pondered over writing a post myself on FB…. It is as if you have read my thoughts… I often felt as though I’m part of a sick game show ‘push the parent’ I have been lied to by educators and health … all documented …. they all sit there like the Churchill dog nodding , adding an occasional ‘ we understand it must be hard ‘ …. when they haven’t a clue … my son is 15 and we have just last week received a diagnosis SPD/ASD ( plus I know very much PDA ) …. the damage is done Docs … forcing and pushing my son through a system choosing to ignore the obvious… I will never be o.k now and neither will he …. Thanks for nothing

  2. Hilary Stace says:

    So true. Such a common story. Doesn’t have to be this way. Government please listen.

    • I do wonder what it will take before they listen and change the system. I see their apparent efforts to get feedback sometimes, but the core of the way the system functions and treats us just doesn’t seem to be changing.

      • Wife of Jack says:

        The system is far too complicated and wasteful of money, it could be made far easier to negotiate, with services provided under larger, more comprehensive umbrellas. So many small regional, charitable organisations trying to fill gaps. Service coordinating organisations that use up government money to place yet another step in the process doing what any parent or social worker with phone/internet access can do. Schools struggling to provide even the basic requirements for children like ours due to funding constraints. Unfortunately the Government is not listening, and is quite dismissive of parents under extreme amounts of pressure, particularly the Ministry of Education. I have seen a few press statements and sound bites lately that make me want to yell out loud. A label of moderate or mild needs does not make a child’s diagnosis or real life challenges suddenly disappear. The Ministry thinks they are actually providing services but on the ground it is clear the system is broken beyond repair with many struggling children hiding behind convenient labels. I wonder what will happen to all these vulnerable children who have gone through a school system pretending to educate and provide therapy, but in reality they are hardly scratching the surface?
        I’m not broken yet, I have worked really hard to get my child to a good place and somehow have energy left over. Cynical about the system and angry for other people’s children is how I would describe my feelings currently. I am sorry to hear how tough it has been for you lately. Hiding your true feelings and apologising for being the squeaky wheel constantly is demoralising.

        • Very much so, and thanks for your concern Wife of Jack. I completely agree with what you’ve said throughout your comment – it is, in my experience, exactly the way you have described it, and I have the same concerns you do. The system is not a healthy one.

  3. Bec says:

    You have perfectly described something that I’ve been feeling for such a long time. The system broke me too, and continues to do it to me all over again as my sons make the transition into adulthood. This is something that isn’t ever talked about, and you’ve done it so well here. Thank you.

  4. smirkpretty says:

    This is heartbreaking and so important. Thank you for having the courage to write it.

  5. Michelle says:

    So true, I have being feeling so broken and invasion of privacy too it continues to do it to me. I really like your posts. Thank you for your blogs.

    • Thanks for your comment and your encouragement Michelle. You’re absolutely right – the constant invasion of privacy and having your life recorded by strangers, just eats away at you. Not a nice experience, it could surely be done so much kinder and better than it currently is.

  6. Dearna says:

    It makes me angry that this is how the system works. I have a son with ASD and I am a TA and I am so angry at what the system puts us and our kids through just to get the services we need. And so often are declined for anyway. It creates the kind of exhaustion that cannot be fixed with sleep.

    • Exactly! Sleep is nice, but even when I’m not so stressed that sleep won’t come, that feeling of exhaustion remains. By the way, thank you for choosing to be a TA, I have so much appreciation and respect for people in your line of work.

  7. vinnysvoice says:

    So gut wrenching and beautifully written. The system needs to change and also the autism community needs to change. It should be ok for a mum to say how they feel and not be torn down for it. Hopefully we will be able to make some change. Love your posts!

  8. Kay says:

    So glad you shared this. Thank you.

  9. Naomi says:

    We have 3 on spectrum, ranging aspie to nonverbal. Each is treated by the government as if they were an only child. As if we were able to devote all of our time and energy to that one, so the fact that 2 other children have real needs is never compensated for.

  10. Megan.northcott says:

    Well done you. My son has been away at a residential school for 4 years now and is 18 in December. I brought him up alone for 10 years. I’m still broken and wonder if I will ever fix. We should not be ignored or dismissed by others in our community and this is worse in a way. With you all the way brave girl.

  11. autismit says:

    Thanks for your honest post – it needs to be said. The ‘help’ that we struggle to get comes with so many strings attached. There’s also no recognition that the parade of uncoordinated professionals through your family’s home and life brings with it a huge amount of stress. If money was no object, I would pay someone to manage all these ‘special needs’ things so I could just be a mother and enjoy my children.

    • Absolutely! And yes, you’re exactly right – they are an uncoordinated group of professionals, and us parents have to become their coordinators in my experience, it’s just more work for us to do that shouldn’t need to be done if the system was better organised and more aware of what parents go through every day.

  12. grahamta says:

    Hi there. First of all I am very sorry the system has beaten you down and I wish I could take you out for coffee and chat (I am doing that this morning with some autism moms while my child is in school…rant time!). I am from the U.S. and while I have had a lot of the same feelings and experiences, we don’t have the same system in terms of how they can manipulate services. There is absolutely zero focus on the parents at all outwardly, but there was a lot of judgement behind the scenes (which I became acutely aware of when a case worker forgot to hang up the phone on me during a 4 way call with my husband, me, the case worker, and her supervisor…I was still on the line when the caseworker trashed us to her boss). But in large part, if your kid needs the services, mostly it is first come, first served. If I screamed and whined and hinted at law suit, that got more services and change. Getting a lot of services seems great, but in my experience, the services were very uncoordinated with everyone working in silos and there seemed to be a lot of inadequate therapists. So it is still a mess here, especially if you have a challenging case (lots of deficits across the board with learning problems piled on top…i.e. a kid like mine).

    • Louise says:

      I just wonder how any of you think your child might be better served, keeping it mind that governments must account to the taxpayers how their money is spent. That is why so much oversight needs to be done. The people doing the oversight are often also getting paid with taxpayer funds as well.

      • Louise, did you actually read my post? Do you genuinely think that the way they treated me and other parents is the only and right way to treat people who are already under huge amounts of daily stress and exhaustion? I can think of many ways the system can and should be improved, including: recognising and allowing the variety of emotional responses parents have; granting families the funds once the need is genuinely assessed so they can choose their service providers, even if that then required evidence of the use of those providers; not constantly reassessing the existence of a life-long condition; organising themselves better so the parent isn’t dealing with so many different agencies and people in double-up roles; focusing on the job they are meant to do – helping the child – instead of making the parent feel interrogated and judged to the current extent that they are. And that’s just off the top of my head. There are so many ways to improve the system that have been talked about endless times in thousands of posts, reviews, and studies. My post was about the impact of the current system psychologically, if you genuinely want to find out more about alternative ways to spend – and save – the money currently wasted in the system, feel free to research that topic, there is plenty out there on it if you look.

      • Kiri says:

        The same amount of oversight and responsibility to taxpayers does not occur with other medical conditions. If you need coronary care, for example, all you have to do is visit a doctor and your receive treatment (i.e. medication) on the spot. If you need further tests, you only have to wait a few weeks.

        You do not have to fill out ten pages of forms and have two or three “assessments” by unqualified people. No-one implies that you are to blame for your condition, although surely this is more likely with heart disease than autism. You do not have to make a decision about which of the essential treatments to receive because they are ALL funded. Finally, you do not have to wait a year or longer for help.

        Incidentally, those who care for children with autism are taxpayers too.

      • grahamta says:

        Separate fields (OT, PT, behavioral, speech) + multiple contracted companies for each field = disaster. They should at least be under the same management with someone who has the authority to fire and they should have mandated group meetings to stay on the same page.

    • Thanks for sharing your experiences grahamta. For what it’s worth, there are some agencies and service providers here that will eventually respond the way they should when faced with a complaint about how people are treated (or neglected) by the system, but navigating and activating the complaints process is not straight-forward and doesn’t always get a response, and of course can be stressful and time-consuming in itself. I suppose that’s a problem that needs fixing too – better systems, more transparency, faster complaint resolutions, it all matters and all helps. Thanks for your comment.

    • Wife of Jack says:

      Wow, so it’s not just in New Zealand, this silo mentality to disability support. A little bit of help here, a scrap of something here, a little bit of help over there, having to repeat yourself time and time again. I have wasted time and energy chasing many dud leads to nothing just so I might be able to scrape together some sort of comprehensive program to help my child through school and life. Unfortunately even if you are prepared to throw money at the problem, there are still very few quality programs to access. He or his Autism is not going away because he is a school aged child, where has all the help gone? It’s like the lights have been turned off! The school cannot be expected to provide the sum total of his support, there is no way to accomplish all of that in a main stream environment. In the next few months I have to do another round of researching, meetings, appointments and phone calls to cobble together something for him as his needs change and evolve. Many exhausted parents would not have the time or energy for this six monthly overhaul of requirements that I have to do. If you are relying on the system to step up and provide for your child, you will be sorely disappointed. I seem to spend a good part of my life trying to find support for him, I would rather reserve my energy for him and our family.

      • Exactly, well said Wife of Jack. Our kids need us to have our time and energy dedicated to them to get the best results, not have us pre-exhausted by a system that may or may not end up offering us basic supports.

  13. denise says:

    I am from the US and my non verbal son receives services and Social Security for disability. I must keep up with all our paychecks in addition to therapies , school stuff , and raising the other 2 that also have issues. Your blog really hit home with me! We had to declare bankruptcy after my husband lost his job and we used all his 401 K on therapy b/c at the time govt was not paying for services. We got to keep our home but had to loose so much just to get him on Soc Security that I am afraid of loosing his benefits. I can only work a few hours a week at a very low wage. Lets face it I only have a few hours a week that I CAN work but work gets me out in the community. I NEED work ! I NEED to be a vital part of something other than autism ! So here I am a college grad working a fast food job which works with my schedule which of done correctly Is wayyyyyyy harder than I thought. And I live in fear they will jerk away his services b/c someone myself or one of his service people will turn in his paperwork late or wrong (which has happened) . Bless you a million times !

    • Oh Denise, I relate so much to what you’re saying, and I am so sorry for the hardship your family has been through and is going through, my heart goes out to you. I completely understand the need to work, I feel lost without it (I’m currently – intentionally – unemployed, to focus on my boys). I miss the recognition, the fulfilment, and the pay of work. I’m also highly qualified but doing nothing with my degrees, which feels so pointless and frustrating – I gave up my much-desired and loved lecturing position to be with my son years ago, and I know when I return to work of some sort (hopefully next year when both kids are in school) that it will be part-time and low paid, those jobs are the only sort that look like they’ll fit in with my schedule to make sure I’m available for the kids. It’s depressing in itself. Thank you for bringing up and sharing that part of what so many of us struggle with too, it’s an important part of the picture of what we go through.

  14. vontoast says:

    It’s not OK. I hope writing this post gave you some momentary peace of mind. You have my support. I don’t think the people behind the desks realise the emotional drain they put on people. It is difficult enough to ask for help and to show up, let alone jump through the hoops they place. The paperwork, well, Aspergers helps here, some small mercies. Trying to portray the “right” emotion, tone, body language sounds extremely trying. You are not alone. Stand on my shoulders. Or rest your weary head.

    • Thank you for your support and understanding vontoast. And yes, writing the post has given me some peace – not just because I can say it out loud and haven’t received judgment and vitriol for my honesty (so far!), but also because it helps to know others understand and care and want to see these experiences change too. Blogging can be very good for the soul sometimes 🙂

      • vontoast says:

        Blogging is good for the soul. Absolutely. Yet sometimes when we click Publish, we wonder what the response will be. Will they get it? Will they like me. But really what matters most is that we ourselves like it first. If other people understand. That is a bonus. Since blogging about Aspergers I have found people to be so wonderfully thoughtful and understanding. (Where the idea that there is no empathy, I have no idea!) I wish I knew about it all sooner. Life would have been easier with the knowledge that there are people like me out there. I have naturally tended to gravitate to others with Aspergers through life but at the time none of us knew the word let alone what that meant.

  15. Kristin Rose says:

    You have said much more than I have been able to put into words on this topic, and you said it perfectly. I am on two anti-anxiety/ anti-depressants every day and it still doesn’t feel like enough. hugs hugs hugs hugs and hang in there. You are not alone. Together as a community, if more of us speak out, maybe we can shift the tides.

    • Thank you Kristin. Whenever I get the chance to provide the feedback to the system and services, I do take that opportunity with the hope it will eventually make that difference – if not for us and our families, then at least for those who come after us. I’m sorry you’re finding things so hard right now too, one of the sad things about writing this piece is finding out so many of us are going through the same experiences and emotions, it doesn’t have to and shouldn’t be this way, but – as you say – it’s good to know we’re not alone too.

  16. Sunny says:

    I just want to thank you from the bottom of my heart. My children are grown now, however I am very involved with one of my grandchildren who is ten and his mom. Your article was so “right on”.
    I have been working with the “system” since 1975. I live in the US. I had to work so hard to get my family the help they have needed. I know that working with the therapists, school personnel, doctors, and government agencies certainly works better than fighting them. You are so right about the image you project. Smiling, dressing appropriately, using the right vocabulary, looking confident and having a good attitude is so important.

    When my children were young we did not have FB or any other forum to talk about the problems we were having. We had to keep it all inside until we saw a therapist once a week, for an hour, then we had to be guarded. We did not dare confide in anyone for fear of the stigma that goes with having a “problem child”, mental illness, learning disabilities, and illnesses or conditions which wreck havoc with our children and our families. I am so happy that people are more aware of what we are dealing with. There is a much better understanding of these problems now. A new DSM came out last year. Now, you are less likely to be ostracized if you discuss your life with someone who is not facing the world we live in.

    I was in some type of therapy ( individual, couples, family, and child) for twenty-five years. All of this takes such a toll on individuals and on families. Having to sit in a room with your family and discuss personal issues with a judging stranger is devastating. I have not allowed myself to think about how these years of insecurity, judgment, insufficient funds, and loneliness have affected me and my family. When I read your article I felt relief from those bottled up emotions. I am looking at life a little clearer now. You have helped me see that I, too, am damaged. Thank you so very much.
    I now realize where I need to start my healing. Sunny

  17. Karen says:

    Well done for being brave enough to put the words of so many on paper. I constantly doubt myself, wonder if I have said too much, not enough, fought hard enough, done enough therapy at home. Then I chat with other autism mums and find out some of them have had it harder than me-more doors slammed in their faces, more battles, harder home situations. Then I feel bad I ever made a fuss. Then I think about the mums. 30 years ago who got no help and were told their kids were just naughty or mental and I think I should be grateful. I’m sure all this is what is commonly called depression, but I know if I take my eye off the ball, if I act like everything is fine, if I say I am happy with what we have, we could lose it all in an instant.

    My saving Grace is being able to talk to others and listen to others. Share a little with people who won’t judge, give a little advice when I can and accept the same. I am a Christian and I don’t know how I would cope without my faith, but we all need something to keep us going. I hope you have something to keep you going, someone who still inspires you. Your child thanks you. And so do I.
    God Bless x

  18. Hilary Stace says:

    You have expressed frustration that so many relate to. There are good people in all systems, but why are they so hard to find, and when you find them so little resources for them to do their best?

  19. Rachyrah says:

    What a superbly written poignant piece. I feel every bit of this as I fight the next fight for my Auty son.

    I was a radiographer in the NHS by trade; what is strikingly apparent to me is that all of this is down to the basics of various health professions having their own histories,training, justifications, etc. how utterly blinkered. Each speciality is so heavily boundaried, both culturally and financially. I’ve no idea how you integrate such profoundly different (and often contradictory) professions together when the obvious need of patient care and best interest fails to inspire that much needed transformation.

    I had to leave radiography to cope with my son’s increasing care needs, and have since become a trainer of special-needs parents. This has given me yet another perspective. I am perpetually astonished at the zero support offered to parents suffering significant grieving and adjustment processes. What your excellent article highlights is that not only are we not supported, but we are damaged by processes. It has been if great reward to me personally to be a part of a scheme that exists solely to support special need parents. And the thing that brings my trainee’s (all special needs parents..) onto the scheme? They feel overpoweringly that they don’t want someone else, struggling with a devastating diagnosis and fighting the healthcare system, to go through the hell they did, alone. What amazing people they are to offer support in this way; it is a privilege to work with them. If you live in the UK, contact Scope and ask for a Befriender to have emotional support from a fellow special need parent who truly understands.

    • denise says:

      another autism mom and myself have been very interested in being a parent trainer for special needs families. How did you get started. This is SUCH a needed service!

    • What a lovely system of support that sounds like. Unfortunately I’m not in the UK but some of my readers are and I know they will appreciate the information. Here we do have a charity called “Parent To Parent” that I think does something similar – hooks up parents of children who are going through the same challenges. I’ve never really looked further into what they offer, after your comment I’m thinking I should. Thank you, for sharing your story, your insights, and your suggestion.

  20. Annette says:

    Slightly different perspective from me. I am an adult with serious mental health issues and I know something about how degrading and exhausting it is to fight for services. The difference for me, is I am the one who gets ill. You are doing this for your child, so you have a whole other layer of worry or concern. When I am not well, sometimes I have enough awareness to see what is happening around me, and I see the face of my husband, or one of my parents, and I know I am causing them stress and pain. Not my fault, but I know how hard it is to deal with me. I don’t know your son, but as an adult child I want to thank you, on behalf of all of us that need the people that love us. Thank you for putting yourself through the humiliation and the stress and the worry. Thank you for filling out reams of paperwork, and sitting through meetings and dealing with workers and all the rest of it. We can’t always say it, but you deserve to hear it. My life is hard and difficult, but I’m on the inside.

    • Suzanne B. says:

      That is beautiful, Annette. You are obviously a sensitive soul. I am sure it is one of the many parts of you that your husband and your parents love so deeply. I wish for each of us–parent and child–more peace and compassion in our journeys in life.

    • Oh Annette, your comment really touched me. It is so important to hear all the voices involved in this experience, and no doubt the most important voice is that of the person who we do this all for. Thank you for taking the time to share and to comment – thank you for sharing your voice.

  21. Pat says:

    I agree. The government is horrible when it comes to this kind of thing. So why not just stop asking the government for any help. At. All. I have 4 kids who have never darkened the doors of government schools because we refuse to ask someone else to pay for our kids education. HOME SCHOOL. We have had CRAZY medical bills over the years, which have caused us to work overtime and rely on friends VOLUNTEERING (not being forced by taxation) to help. Stop expecting someone else to pay for your child…and if you won’t quit expecting, then at least quit whining about the requirements.

    • Pat, your comment is as short-sighted as it is unnecessarily cruel. It would be unethical for me to not seek appropriate help for my son, if I cannot afford it I can’t just say “oh well” and leave it at that – I would be charged with neglect if I did such a thing, and rightly so. You have also divorced your comment from the reality that the system is built around the idea that they have already taxed the living heck out of us on the proviso that those services and funds would be available to families like mine when and if needed – sticking to your principles in this situation and refusing the support and services our taxes are already meant to have paid for, would be absurd.

      You keep your weird ideals where good parents turn down help and expertise and never accept back what they have already paid for, and I’ll just keep looking after my family. Your world where parents should be attacked for speaking up, instead of work being done to fix a very poorly run system they are meant to be able to rely on, is a nasty little world – feel free to stay away from blogs like mine where people actually have feelings and give a crap about other people.

      • Pat says:

        You are right, that was unnecessarily mean. Sorry. I didn’t know I was dealing with a kiwi when I wrote the post. However, that proves my point in that (by your own admission) government run systems are inefficient and ineffective. So the next question would be, why do you stay in a country that taxes its citizens 35% and higher and then constantly gives you grief when you try to get services you’ve paid for? Go somewhere where you can buy quality private health care insurance and education that will actually help your child. I’d suggest doing so quickly, however, because there are very few bastions of freedom left in this world….and it sounds like your own health won’t hold up much longer anyway. You can’t win against them….not without exhausting yourself. And even you can’t argue with that.

        • Pat, you won’t get any arguments from me on how inefficient the government is with the money it takes – just the costs involved in taking, reallocating, constant overseeing, and the ridiculous layers of bureaucracy clipping their tickets at every level, means wastage is inherently built into the system. I do use my voice and my vote where I can to make a difference to that state of affairs. You ask why I don’t move countries? That’s complicated, as I’m sure you understand – even more so with two challenging children who struggle with change. There are certain excellent aspects about living in NZ – peace, way of life, weather, family, all sorts of factors – that currently outweigh the need to run away from an often poorly run government services system. For now we stay and fight, and according to the feedback this post has received, that fight is in very many other countries too, and an important fight to win. Thanks for our apology by the way, I appreciate that takes a certain sort of person.

  22. Thank you for sharing how you feel. It really isn’t easy all round and parents are given a bad rap. Sending a supportive ‘wave’ from South Africa.

  23. michelle says:

    did I just write this? Every word has and still is our experience. Hard tokeep my head above water. And I know I am not a lone. And I have great MUM friends w this story too…But yes, others just seem to be in control!? Thank u for sharring.

  24. socalsally says:

    I completely agree. I feel like a horrible mom/person because I’m so angry so often. This process seems to have destroyed the happy person who only ever wanted to be a mom above all else. The me of the past would be so sad to see who I’ve become. I spend so much time trying to escape on my phone, watching tv, playing games, reading online tabloid stories. I am beginning to have a hard time socializing because I have been in a cave for the past 6.5 years. I feel like I am becoming damaged, too, because my life is so not normal.

    We have been homeschooling my son but literally just started the process to send him back to school. And I’m taking old antidepressants to make it through without melting down in anxiety. I have never experienced so much anxiety as this process has triggered.

    Years ago after we pulled my son out of school, I started running half-marathons to do something for myself. And if there is no medal, I won’t run the race. I need a symbol of my success to hold onto. It helps a lot, but it doesn’t fix or improve the screwed-up process that, yes, is supposed to help. But it helps me stay somewhat sane.

    • socalsally says:

      I just read Pat’s comment… wow. As a mom who has homeschooled for 5 years, it is *not* easy. There are some pluses, but I never aspired to be a teacher… and it is very difficult to homeschool a child who is aggressive and larger than you…. who will put his foot through a wall and scare your infant, preventing her from napping, if he’s not happy. Yes, we pay taxes for our children to have a free education. We pay taxes that cover social services. Taxes pay professionals to do these jobs. Whether we utilize the services or not is our decision. But, for me, I have reached a point that exceeds my abilities to help my son. So her needs to go back. It’s not a failure on my part at all… just a humble acceptance that he needs more than I can provide.

      • Absolutely. We do the best we can with the resources and skills we have and can access. There is no need to judge others for taking different paths, when we’re all motivated by the same thing – finding what works best for our individual child. We may have preferences and strong views about what is best for autistic kids in general – and some options are objectively bad – but choosing public or private or homeschooling is a very individual decision that shouldn’t rain down condemnation from complete strangers. Thanks for commenting socalsally.

    • I relate to so much of that socalsally. I also feel like my social skills have greatly deteriorated over the years, and I need that metaphorical medal in my life too! I don’t home school my son but have contemplated it many times, I have just so much respect for those who have the strength and energy to make than work in the best interest of their child – I know the decision to home school is a tough one, and returning to mainstream schooling is tough too. Much respect, and best wishes to you and your family.

  25. Paddy says:

    I, like so many others agree with you. My favourite is that we were lucky to have a brilliant TA at primary – I swear that she loved our boy more than us she was so dedicated. All for minimum wage. On SE assessment days we didn’t give him his ritalin because we knew that if they saw him guided and calm in the classroom, support would disappear. Because they are limited by policy and budget and not humanity and common-sense (yes I am generalising) they don’t want to recognise that it is because of the interventions that he is doing well and maximising his potential. Wishing you and all our community every hope for the future.
    As a colleague once said to me “I love hearing you talk about your boy; I believe children choose their parents and he is lucky”. I would say the same to you.

    • Lovely Paddy, and thank you for sharing your own experience – there are so many untold stories about what we go through to make a faulty system do what needs to get done in the best interests of our kids, these stories need to be heard.

  26. Ah! This particular blog post has resonated with many a parent in many a country. Any chance you could address the UN? (and am not joking!!) Just how is it that this ‘system’ manages to be faulty in every country – did it start in one and did everyone else copy? No vision, no understanding and above all no cop-on to the fact that in the long term the costs of this ‘system’, financially, psychologically, societally and otherwise are just enormous. Am in Ireland btw.

    • I appreciate you commenting neverending – I’ve also been surprised at how widespread experiences like mine are, clearly there is major change needed across the board. It’s not like the change is impossible, or expensive, or otherwise unworkable, it starts with a change in attitude towards the personhood and role of the parent. It does make me think there are not many (any?) people who have already been through the system as parents of disabled children, involved in the running of the system – or perhaps at least not high enough in the system to create the change needed.

  27. swanarchie07 says:

    Thank you this is describing me right now only my son has complex learning difficulties and a undiagnosed genetic condition, right now I feel broken

    • Thank you for taking the time to comment swan. Yes, the common denominator here goes beyond autism – there is clearly a widespread need to have these experiences recognised and addressed. Wishing you the best.

  28. J C says:

    Written so eloquently. Yes the child comes first, but you need a parent/carer in state of ‘good repair’ that can continue to care and put the child’s needs first, and the parent supported to do this, by whatever means necessary; so yes it does become about the parent also. Disappointingly I have seen over the last year or so written negative comments against others on the internet who talk about this and the parents/carers needs and difficulties.
    I’ve been knocking on ‘those doors’ nearly every day for over a year now. During this time my little man has received no education, no support and has deteriorated significantly- and almost beyond recognition. I have recently received a written apology from the councils Chief Exec. for “distress caused”. I have a meeting next week. I am crushed inside, but have to continue to remain hopeful for my little man. And yes outwardly, I shall remain the perfect model of a parent, calm, pleasant, engaging, listening, firm but not too forceful, will outline some of the difficulties I am having, but not be too negative…..

    • Exactly J C. As parents, we do whatever we have to to get our kids what they need, it just shouldn’t and doesn’t have to be this hard – the system (clearly in many countries from the responses I’ve received) is flawed in some vital ways. I wish you luck in getting your son what he needs and deserves.

  29. Flannery says:

    As always, you put my thoughts and feelings into words in, what appears to be, an effortless and eloquent manner. Thank you, friend. Thank you for staying, for writing, for putting all the raw and painful and beautiful truth out there to be examined.

  30. morentin1326 says:

    Awesome… I have 3 kids, oldest son 22 NT, daughter 19 Autism, son 18 severely autistic. I have been right where you are the last 19+ years. I am not one to complain, I just do or die, as they say. I am fine with my kids autism, as they are. I take my cues from them. We are not looking for a cure, nor do we believe they need to be fixed as they are not broken. As you say, the worse part about autism, is the system and the people who run it. The biggest nightmare, stressor, and bully I have had to deal with is the system. I could go on and on, but you already know. I just don’t understand how a system that is set up to help, can do so much damage. They needless stress out the family, hold our children’s services and financial future hostage with endless paperwork, meetings, reviews always waiting for them to make a mistake, a decision, or a judgement or comment about your or your child or your life and just them having the right to be in your life, your business and your day, is horrible. I have it 2x over. So I thank you, because I have come to see that people, not just the system want us to shut up, smile and go with the flow. That includes family, friends, and the community. Thanks for telling it as it is.

    • And thank you for sharing your experiences too morentin – I understand how precious our time is as parents of high needs kids, so I really do appreciate it when people take the time to comment and share.

      • janet4kidz says:

        Thank you so much for putting this so well. I used to write my blog regularly talking of my children’s ups and downs….but i have become too beaten down. I have epilepsy and my childrens autism was caused by the drugs they gave me in pregnancy without warnings of what damage they could cause. For about 8 yrs I helped run a charity supporting other families affected and i have been running an asd support group for the dame length of time but i now just feel so beaten. I focus everyday on getting my children through each day ignoring my own health problems and emotions. Just as you deal with one thing another problem pops up so it is a neverending circle. I tell myself one day things will be better but no longer believe my own words. Big hugs to all who feel like this, we are never alone all the time we share xxxx

  31. Vered says:

    dear mama. I’m reading you , and I feel you.
    I can see our circumstances ,in just about any line of your heartwarming share . Thank you!

    It is kind of ‘freaking’ me out how similar your ‘note’ is to my path. …
    I remember having a meeting (oone of many) with disability services , arguing , hugely frustrated , about they way families are being treated ,and often, how it (extra) effects life . I did ask them if it’ll make any different if I’ll turn table over, be abusive and violent toward them ,as I’ve been suggested …..
    As I kept on going , just told them, although I’m not one to do so ,but wondering if I’ll become that way , for now, I will hold you responsible contributing to my health and general well being. their look was puzzled .

    With all my heart, I believe , you are a strong ,considerate , loving sensible individual , and yes, it doesn’t mean that ‘you are ok’ , but I’ve no idea what it’s mean, I’m still trying to work it out with my psychologist 😉

    I wish you all the best and ‘clarity’ , or perhaps acceptness , of dealing with situations in a different way. ….
    blessings ♡

  32. Renee says:

    I had no idea you were a kiwi. I’m also a kiwi. What you wrote is exactly why I have nothing to do with WINZ. My daughter has autism and gets the child disability allowance but we have nothing to do with them otherwise. We have to go back to the developmental pediatrician every two years to get him to fill out the form again to say she’s still autistic like it’s something that’s ever going to go away lol Thankfully we don’t need any extra help on top of that.

  33. So true. Exactly what I have been through – only I was actually falsely blamed of causing my ASC children’s anxiety, when it was their school experiences. It’s disgusting and it’s largely down to the total autism ignorance amongst professionals, with some dishonesty thrown in. Here is my latest blog post on this shameful issue: I will be reblogging your post.

  34. Ought to add, that I am now in the position of resourcing privately due to the utter failures in state services.

  35. Reblogged this on Planet Autism Blog and commented:
    We must all continue to speak out about this problem.

  36. I get assistance to fund my special contact lenses for keratoconus while I get fobbed off for support so I can move out of home. Stupid pen pushers.

  37. Sema Cemal says:

    So sad reading this. I had a 7-year battle trying to get educators to meet my son’s special educational needs. He has Aspergers and this is a ‘hidden disability’ – years of being stressed, patronised by the so-called ‘professionals’ and questioning my own sanity. Having got him a good statement and placement after huge emotional and financial costs, I’m still worrying about the LA knocking on my door to take things away. We parents need to get together so we have a stronger voice. My story about my 7-year battle to meet my son’s needs, and my blog, can be read if you go to – (feel free to circulate and comment)

  38. dinkyandme says:

    Reblogged this on Dinky and Me and commented:
    I don’t think I could have put this any better myself… It is how I feel…

    Although I am prone to the odd meltdown of my own at services… Which lost me our county autism support service and got the school saying that I am ‘very strange’ to social services.

    But the truth is it is impossible to be perfect all the time.

  39. Peggy Roberts says:

    You are not alone in your feelings! Do not discount yourself, for you need to be mentally healthy so you can be the best mom to your sons. This journey is extremely difficult and it is one I am just starting out on–my son is 3 was diagnosed in April of this year. Please don’t feel the need to hide yourself and your feelings away. YOU are just as important as your sons!

  40. janet4kidz says:

    Reblogged this on janet4fact and commented:
    This mum sums up so well the feelings of so many of us parenting a child with an invisible disability x

  41. Frustrated in MD says:

    Add to this the feeling that nobody is out there to help your child, they’re all there to be roadblocks and hurt your child. I’m right there with you. You would think that these people go into special education because they want to help children, but it sure doesn’t feel like it at all. Sure, there are the rare people in the school system that really are there to help you, but anyone in a role that decides your child’s future only cares about the bottom line. Don’t get me started on the organizations that are supposedly there to help you that try every way to keep you from accessing funding or the insurance companies who still refuse to pay for my child’s therapy. I have become an angry, cynical, depressed person who feels that vindictiveness is my only method of defense at this point.

  42. Fully agreed with your words. Nobody will understand your feeling and the govt officials will surely not. They came for their duties; Don’t expect any emotional feeling from them. you should do all alone.

    But our government should be more careful and humane in this issue and should tackle the situation with more emotion.

  43. Pingback: The crushed backdrop | lovenlearning

  44. Grainne Armstrong says:

    I am living in Ireland , it is the same here , the Government continually take or cut back on services and monies for people with disabilities . I really think the only way to get the services you require is to actually give the monies to the Parents to buy into Services that they need , that we could decide which Speech therapist to use or O.T , which helpers we use , which activities we want to buy into for our kids , instead of the other way around , lets face it Parents are their child’s experts they know them inside out 24 hrs a day 7 days a week . It would mean there would be competition and higher standards among the so called multi discipliniary teams , the fact that they were not automatically getting a salary at the end of the week , for crappy work , they would have to be putting themselves out there to earn a wage . Works out much cheaper also to give monies to Parents rather than running these services .Just my thoughts !

  45. Caz says:

    The system has tried to crush me using me against my son. He is non verbal severe autistic. Thousands of meetings not to help my family but to justify their own salary, they have to do so many meetings to justify their criteria. Pointless useless and judgemental. Its a war on many levels mostly its about our soul and unconditional love.

  46. Deirdre jelly says:

    well written. Feel exactly the same.

  47. Carol oates says:

    I agree with almost all of this. Especially the fear of speaking out. I’ve been shouted down, called pushy, and told to just shut up when I’ve spoken out in the community. However, none of it will shut me up. I get especially frustrated with the embrace autism camp since they are usually the ones trying to close down any voice who tries to tell it how it really.

    The point I disagree with is comparing financial supports for carers to unemployment. They are not even vaguely the same thing. Caring IS full time employment. Often with longer hours that would be considered legal in other areas. So it shouldn’t receive the same supports as unemployment. It should receive a whole lot more.

  48. I work with families who have children with various special needs. This is a common thread regardless of the child’s disability. It breaks my heart that the government is so blind. In order for the kids to be taken care of, the care givers need to take care of themselves too. We can’t help others unless we are healthy and strong ourselves. I truly hope that all parents out there can find some time to find what re-energizes them, strengthens them, etc regardless of the hoops that are being jumped through.

  49. Leah says:

    My heart breaks reading this; for you, me, your child my child, all of us. I’m exhausted just dealing with the challenges of autism, let alone the countless and lengthy parenting courses I’ve been put on.
    I’ve found out though that actually I am a good mother, not what the system thought I was or implied I was.
    Massive respect to you voicing your feelings. I go from delighted and intrigued to anxious and depressed in my role as a mother and trying to fight for what’s best for my child. Fighting against the system and even myself at times against prejudice and misunderstanding. Continue on and be encouraged you are not alone.

  50. Pingback: “Parents are the Enemy” – "I Used to Make Bread"

  51. Kat says:

    Reading your post, and the comments made me cry… I mean ugly cry….because its so true. After having our family broken down, picked over, pieced together again, broken again ans then left to flounder I came to realize one fact. NO ONE CARES….PERIOD. Not educators,social services, governments, because when they go home this doesn’t affect THEM. So I began the painful process of teaching my children this simple truth…YOU ARE NOT BROKEN. You are not the sum total of the labels you are given to bear. You can succeed despite the hurdles before you, because really, what other choice do they give?

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