My second column for Special Needs Jungle and I am very excited! I suggested to Tania that I write my next column on school refusal. It is a subject that is very close to my heart and one that can plunge me into the depths of despair within an instant.
It’s been six weeks now since the schools returned after the long and somewhat hot summer break, and 12 weeks since I had the conversation with my now 15 year old son about the importance of Year 10. All the while, I was trying not to mention the ‘school’ word as this has the potential to create complete shut down and gets neither of us anywhere!
I end up feeling completely isolated, helpless, anxious and worried (and in the early days of the refusal, angry too!) So if I am feeling this way I can only imagine how my son must be feeling. Not only has he got the pressure of not attending school, he now has the added burden of my feelings.
But it’s not that he doesn’t want to go to school, not deep down; he just can’t! He has the best intentions when we do talk and discuss the issues surrounding non-attendance, but when it comes to the crunch he just cannot do it.
I have spoken with many parents of children who are “school phobic” and refuse to attend and find the stories are similar: little or no support, threats of Education Welfare, an overstretched and under resourced CAMHS service, School that doesn’t know what to do and the local authority whose departments are so preoccupied with protecting their budgets that the needs of the child are unmet for often long periods of time.
So what can you do? Well, if you are a parent you can go and speak to the school, try to find out (if you don’t already know or suspect why the refusal is occurring) why this is happening to your child. Speak to a member of staff who you feel comfortable with and where possible, follow this up with an email to keep a track of the communication and a record of any attempt to liaise with school.
Try to be open and approachable. Schools are there to provide support to the child and in the majority of cases will want to support your child back to school. Ask school if there is a counselling service available to pupils as this may be helpful, enquire about any pastoral support available and look around for any local parent support groups for yourself – self-care is very important especially with this type of difficulty, as school phobia can be misunderstood and there are many well-meaning friends out there that will be telling you how to get your child to school and how they would be dealing with it if their child refused to attend!
Keep the paths of communication clear, even if you are feeling frustrated and angry and try not to respond emotionally to what may feel like criticism. However if this does happen, and it has to me, then take the time to reflect and process what happened. If telephoning feels difficult or daunting, then email or write a letter expressing what is happening, how you and your child feel and how you want the situation to progress. If you work with the school to try to improve attendance, this will demonstrate good will to Education Welfare, which can be useful if non-attendance becomes severe or permanent.
See your GP and again ensure it is a GP that you feel comfortable talking with. If that means waiting a few extra days for the appointment then so be it. Better to wait a few days and be heard, than to take an appointment offered and leave feeling judged and frustrated.
If the refusal is ongoing or you are worried about your child’s mental health, ask for a referral for your child to CAMHS (Child and Adolescent Mental Health Service) They are the service that are there to help when children are experiencing difficulties with their mental health and wellbeing. There will be a reason for school refusing even if it does not seem obvious. CAMHS are available in every area and have counsellors, psychologists and psychiatrists, although you may have to ask about this service and there could be a waiting list. Ask about medication, could it be beneficial? Treating the underlying cause of the refusal, for example anxiety, may help with communicating with your child about any difficulties around attending school. You won’t know unless you ask. If you are unhappy with any service you receive from CAMHS, ask for the manager of the service to contact you so you can discuss any problems.
If your child has a statement, then you can contact your case officer and ask for advice. There are home tutors available if your child’s difficulties fit the criteria or online learning such as Academy 21 which would need funding via the school or LA. But you will need to ask what is available, don’t assume you will be told.
If you are employed by the SEN team from the LA and are reading this, take this opportunity to put measures and guidelines in place that are parent-friendly. You need to demonstrate that you are following the guidelines given by the DfE on school attendance and school refusal and be open and transparent with parents about what is happening and what needs to happen.
Lastly, be prepared for the long haul and be kind to yourself, small steps are better than no school at all. Depending on the age of your child and your circumstances, take any reintegration slowly. Build up and go at the pace of your child, listen to what they tell you they can cope with. It might be that you need to start with one lesson and build up. Chances are, if you try to go quicker than your child is ready for, it could backfire and you may find yourself back to square one. It may be a case of two steps forward, one step back so look for local support groups or charities too and see what suggestions and ideas they have. Facebook have all sorts of forums to support and I’ll add links in here below.
Above all keep calm and keep strong; it might not feel like it now but you will eventually find a solution that works for your family.
Have you had similar experiences? What are your tips for coping and helping your child?
Useful Links
- http://www.camhscares.nhs.uk/
- http://www.surrey-camhs.org.uk/
- http://www.schoolrefusal.co.uk
- http://www.schoolrefuser.org.uk/
- http://www.facebook.com/groups/schoolphobiarefusal/
- http://www.cantgowontgo.org/
- http://www.studioadhdcentre.org.uk
- www.education.gov.uk/aboutdfe/statutory/g00219676/health-needs-education
- Helping your child make positive connections that support their mental health - February 9, 2023
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- Helping our disabled children understand that difficult experiences don’t define them or their future - February 11, 2022
Hi, another option is elective home education. Of course this should be a free choice and not a forced choice but school refusal is one of the reasons why parents do turn to home education.
Thanks Fiona, a really good point, and if Home Education can work for you there’s no reason not to go with it. There are forums and a website that provides more info: http://home-ed.info/ is one of them What I have been hearing though is that parents seem to get very little or no support at all with school phobia and can feel forced to make decisions they would not otherwise have made.
I agree, but it can lead very easily to loss of services and help. Home education is amazing, as you say when it’s a free choice. When it comes from desperation, it’s a very different thing. A child who is school phobic is so as a result of some kind of trauma. And I suspect that long term it may be best to address that trauma and resolve it… whether home ed is then considered freely or not. I home edded my eldest and it was wonderful and terrible all at the same time. In his case, I obtained a statement three years later and he has since been in an amazing special school.
I have an Daughter with ASD who left a Specialist College at the age of 19 as 3 years funding is the maximum permitted. Although physically 19, her emotional age is 12. As there is no other facility for her, we secured a place at a mainstream college. She could not cope, understandably and we had to remove her voluntarily. She is now at home. Neither Connexions or Social Services can help. Both bat us backwards and forward blaming each others budget and lack of resources. So what now…..? Home schooling is the only option? Specialists we are not. Someone to point us in the right direction is sometimes all we need and even this is a battle.They say that ASD children are born to strong parents. Fighting for every bit of help for your child’s basic rights is exhausting.
Dear Yvette, what an impossible situation to be in! I can only imagine how very frustrating it must be. Who can you complain too (if you haven’t already) – Head of adult services? In Surrey there are carer support organisations -http://www.mvcs.org.uk/ is an example and if there are any of these in your area they maybe worth contacting as they maybe able to signpost you. I wish you and your daughter well.
*sigh*…. I know that I have deliberately adopted a “head in the sand” approach to transition, simply because I needed to in order to survive the present. But we have my eldest’s transition review in July, so I have to face it very soon. I’m so so sorry to hear your story.
As for SEN kids being born to strong parents??? Nope. If it’s a religious perspective (often the case in my experience), I can’t help feeling it’s a skewed reward system. The reality is that the parents who survive it are the strong ones – but how many families have fallen apart for each one that makes it? It is exhausting and while I don’t feel especially strong, just that I have no other option, the fact is that I’m obviously strong enough… and lucky!
CAMHS are a complete joke. My daughter, who has ASD, developed OCD and I asked for help. She got worse by the day and I could not get them to take it seriously. Eight months later she was admitted to hospital because of it, and CAMHS tried to blame me for “refusing to engage”. I had in fact begged for help from SS, the GP and CAMHS. All the other agencies said there was nothing they could do because CAMHS were involved and were the lead agency. I wouldn`t trust them to water my plants.
I’m sorry to read about what sounds like a really difficult time both you and your daughter have had. CAMHS is often the only referral area that GPs have for anything to do with mental health difficulties and if you have had a bad experience it doesn’t make you want to return. This document: http://www.camhsnetwork.co.uk/pdfs/DH%20response%20to%20CAMHS%20review.pdf (if you cut and paste into your browser) demonstrates what a good CAMHS service should look like and may help when comparing this to the service you may be currently receiving.
I have read some of this document and also the Operations Policy of my local CAMHS. IMO there are two issues – Firstly, everything is carefully worded to avoid any responsibility for falling short of best practice.Secondly, there are no penalties or sanctions for not following guidelines. Like most recent legislation, Local Authorities and professionals soon learn that there are no consequences for failure to follow guidelines.The complaints procedure is long, stressful and results (in my experience) in the withdrawal of what little help was given, and when push comes to shove, they close ranks, despite promises.
I have to agree with William about CAMHS. I’ve had dealings with them for all three of my children, and in each case they made the situation worse, through a complete lack of understanding of special needs. Maybe they can help children who have “simple” (???) mental health issues, but add in medical problems, learning difficulties or autism, and they are extraordinarily damaging. The only reason I have not made formal complaints is that they frighten me profoundly. Yep, feel free to quote me, it’s the truth.
I would strongly advise getting to know the education welfare officer in the case of school refusal. Embrace that word, even though it implies a child who doesn’t want to go to school, because that’s the word that may open some doors. The EWO can be really helpful, and as soon as they understand the issue they are usually very sympathetic.
In terms of services, the people I have found to be most helpful are Behaviour Support. Again, it’s counter-intuitive, but “school refusers” are absolutely in their remit, and they have a great deal of experience working with schools as well.
Anxiety and school phobia are dreadful, quite literally, for both child and parents. There is always a cause, and at the end of the day, if you can’t find the cause, you won’t be able to solve it properly. for my daughter it was ASD and environment. She’s now in a special school (in spite of being VERY bright) and all the school refusal has vanished. Why? Because she feels safe.
Hi Benedicte
Thanks for you post, some really helpful suggestions there. CAMHS have a sporadic reputation and where you live depend greatly on the services received. If you feel you can complain then I would suggest you contact the practice manager at your local CAMHS and explain what has happened. Ours was friendly and very willing to listen. Also this link (cut and paste in to your browser) http://www.camhsnetwork.co.uk/pdfs/DH%20response%20to%20CAMHS%20review.pdf shows what a good CAMHS service should look like and could be a point of referral when comparing the service you received to what the service should have been.
Thank you Angela… unfortunately, I had to approach the manager when I needed to make a subject access request for some papers. She didn’t respond well, to say the least. I’ve since been told that they don’t want to work with me again…
Angela – this is a subject close to my heart too – we’re in the midst of it although it seems to vary incredibly between abject and violent refusal and incredibly happy to go – followed by a complete meltdown after school. It is soul destroying but today I have booked an appointment (albeit a month away) to talk to the GP. School are being wonderful but we haven’t identified the root cause – he’s going to start working with the on-site Child Support Worker and hopefully we can make progress. I can’t cope with the screaming and violent outbursts for much longer
Its really tough isn’t it! I fully understand what you are going through. I hope you are able to get the help you and your child needs. I posted a link on a previous comment about looking into what a good service should look like from CAMHS, I’ll post it again here as it may be worth looking at what services should be offered to you as it gives a benchmark to work with.
I’m sorry to read about what sounds like a really difficult time both you and your daughter have had. CAMHS is often the only referral area that GPs have for anything to do with mental health difficulties and if you have had a bad experience it doesn’t make you want to return. This document: http://www.camhsnetwork.co.uk/pdfs/DH%20response%20to%20CAMHS%20review.pdf (if you cut and paste into your browser) demonstrates what a good CAMHS service should look like and may help when comparing this to the service you may be currently receiving.
I have had all my children school refuse at different times ( subsequently they all obtained Statements – so it was worth it in the end).
On one occasion when my son school refused ( we had got the statement but not the placement) the EWO contacted me & started berating me for him not being at school. I paused her and asked if I could say it from our point of view – when she heard what I had to say, she was very apologetic and said that actually as he was SEN the same rules did not apply, and she was then very instrumental in getting all local authority appointments/decisions bought forward.
School refusal is extremely emotional for ALL concerned – including parents. Often schools do not have any clue what it is like for you, so please do talk to the schools, but most importantly the EWO.
Some sound advice, thanks Susanna. EWOs have been used as a threat in the past for many parents but it sounds like it, when they know the whole picture, they were very supportive which is refreshing to read.
My son with AS refused to go to school pretty much from Yr 5 to Yr 10 and all the help we got was being threatened with court due to non-attendance. No SENCO involvement (they said it was an attendance issue not SEN). EWO told us home tuition wasn’t available in our area when we knew damn well it was. CAMHS tried to help but the waiting list for testing was well over a year so had to pay privately just to get threats from school off the agenda. By the time they offered home tuition in Yr 10 he was so anti education he wouldn’t accept it. They even tried to send my husband and I to parenting classes (we are both teachers so know when a child is being naughty and when they are terrified) and our other son had 100% attendance! Our son became aggressive, nocturnal, uncooperative and just sad. We also tried everything but it was making the whole family desperately unhappy so we de-registered him and home schooled. He became the happy lad he’d been at 10 years old again and is now 17 and studying full time at college My only regret is not pulling him out of school much earlier – the whole time he was school refusing was a nightmare. I had to leave two jobs as he couldn’t be left alone so we were managing on one salary and are still paying off the debts. I’m just glad to have my boy back 🙂
Thank yoou for sharing your story. What an incredibly emotional journey you have been on and I am so pleased to read the home education was successful. Its something I had thought of trying and may well look into again. Do you have any recommendations of links or websites that you could post here?
All 3 of my sons are on the autistic spectrum, I electively home educated one from the age of 7 to 12 and one from the age of 5 to 13. It was quite a challenge when we we started with a 7, 5 and 2 year old all with varying degrees of autism. The up side is that you know what is happening to your children , if an intervention or teaching approach isn’t working you can change it without having to have endless discussions and wait until there is a crisis before anything is done. It is possible to tailor tbe environment and curriculum to suit your child’s needs and there is no pressure to do things to anyone else’s agenda.
The problem with most mainstream secondary schools is the environment and social pressures are totally unsuitable for children with, sensory and social communication issues. We looked at local secondary provision but realised that we would be facing all the issues we had avoided by home educating. All 3 of my sons are now thriving in independent schools carefully chosen to meet their individual needs. The elder go to specialist schools. The youngest to a conventional academically selective school. I know getting a specialist placement is not always an option ( we have to pay) but it is worth considering if possible. To often the focus from schools and CAMHS is on getting the child back into school rather than on addressing the issues that trigger the refusing or on making sure the child continues to receive an education in the mean time.
Thanks Catherine for your comment, getting to the trigger of the refusal is so important and often overlooked as you say. Services are so stretched that it seems to me that there is often no opportunity to build relationships and explore what is happening with the child and why, something that needs raising with service providers. However, often as parents we are too exhausted to do so and so the cycle continues!
My son of 6 was a school refuser for a year, but I fought for a statement (we trailed the EHC Plan), he has Aspergers. I believe if he wasn’t a refuser we wouldn’t have been issued with a EHC plan. Anyway we were eventually successful and the plan was issued with Specialist school High functioning Autism. LA failed to name a school so I started the Tribunal process within 2 weeks the LA backed down and named the ‘full’ school that we wanted. And amazingly my son has just completed his first full week after a year at home. He is happy, calm we have had no anger at all. Never ever give up, you will get there in the end, its worth the fight.
I do agree with the CAMHS comments. Here in Shepway the service is just awful. I have been waiting 7 months for a report and now just over a month to find out what the physiatrists plans are! My 6 year old threatens suicide and self harms. I was in a room with 2 professionals and they were asking each other where the specialist Autism service was in Kent!!!! Service here is a Joke.
One of our sons went through all this stuff shortly after moving to secondary school. We tried everything.
We went to the GP who referred us to CAMHS. He attended all the appointments. Their conclusion – it’s a school problem, not related to home or anything else.
We totally went along with everything the school suggested and came up with a few ideas of our own. Nothing worked. Re-integration didn’t work. Well it wasn’t really what I would call any kind of integration – he was expected to go to school and sit on a room on his own to do work that had been set for him. Fine if all the staff actually do what they say they will do, only they didn’t!
In the end the only option, which was fully discussed with him, was to follow the home education path.
I have my suspicions as to whether he is somewhere on the spectrum but he refuses to do anything about it. He is now a man. I can only hope that what we did at that time he will accept that we did it because we love him. Home educating was a leap of faith. We were kind of autonomous and it worked for us.
I think back to the many times we dragged him kicking and screaming out of the house, into the car and off to school. Every child has to attend school don’t they?
Well no actually they don’t – education is compulsory but school is not. Every child is unique and that is what schools cannot deal with. The one size fits all system simply doesn’t work – never will.
My son has ASD with severe anxiety. We lost could have easily lost 8th & 9th grades if we had not known what we were dealing with. Our school was not good at finding ways to help him, but they were excellent at implementing all of my ideas for him. We utilitzed shortened school days, being exempt from attendance rules, some online classes, and one class he took in the library by himself with taped lectures from the day before. He kept his grades up, and we’ve finally got medication lined out to where he has been able to be successful. Last was good, but this year has been excellent. He has not missed a day yet, and is even starting to explore college programs. I loved your article. It was so accurate. Most people do not understand, and it does take baby steps to reach the end goal.
Gosh, the topic of school refusing, home educating and mainstream schools takes me back and also connects me back to the feelings of despair, isolation and frustration at lack of help. We removed our son aged 5 at the time from a mainstream school after a very traumatic five months for him and all the family. He kicked and screamed at the school gates, and had night terrors every night. We were called into the school every day, reduced timetable, meetings about their budget and worst of all, denial by school that he had special needs and told every day that he wouldn’t get a statement. After nearly two years of home educating and rebuilding his self-esteem, we fought for a diagnosis and a statement with help from a SEN charity and he attends a wonderful special school. However, at the point of secondary transfer now, the school no longer meets his needs and again his self-esteem is falling LEA Ed Psys opinion is find another school asap for the rest of junior and then another one for Secondary. I would not wish that on any child, let alone a child on the autistic spectrum. We may be looking at home educating for a short time, if school refusal happens again but at least we will have more confidence in our abilities as parents to listen to our child’s needs. My advice would also be to document everything and follow up everything via an email. It’s time consuming but well worth it, if you need to refer back to it. If you can get your child’s thoughts about school and the trauma of it documented either by themselves or video a conversation about school. Also get familiar with the Data Protection Act, to request information held about you child, it often produces nuggets of information that you may need at a later date.
Six years plus of school refusal for both of my autistic children so I know it well. What I would like to add is that sometimes changing focus can work; ie instead of focusing on school, focus on the mental health side. This is what I’ve done; I focused on dealing with the anxiety which meant a very slow and repeated exposure to things. For my son it meant moving him from being agoraphobic to leaving the house and then gently exposing him to the school environment until he could sit in a class. It has taken me ages but slowly he has learnt to cope with the outside world. Taking this approach has meant I’ve had to ignore the pressure for my son to perform academically. I mean this is not going to happen unless his mental health is right because for my son poor mental health worsens his ASD which then obstructs learning. Now we’re in a position where he is in school part time and whilst he may not leave with many qualifications he is mentally healthier. This can only prepare him well for his young adult life (I hope).
As for state services, I have had to really kick against this. There is no joined up work between CAMHS and the schools in my area and whilst we have a CAMHS psychiatrist the reintegration work has had to be done by me. (Except for medication, no other therapies were offered even though I’ve asked several times.) I have had to be bolshy with many of the professionals around me including the LA, the psychologists and the school (a special school) because no one, it seemed, had enough understanding of how to help an ASD tween/teen overcome severe anxiety. Everyone seemed too ready to give up on him and let him fester at home with home tutoring but I wasn’t happy with this. I argued that home tutoring did nothing to deal with his anxiety and that he should be allowed to reintegrate gradually into school. I mean if he can’t cope with a special school would he ever cope with college, with a work place, with going out? What sort of life would he have if he could never leave the house? I was determined my son should have a good quality of life so slowly I worked with him and helped him recover and I think through this we have shown professionals around us what can be done.
However it has been stressful. No-one properly recognised my son’s difficulties and professionals were too ready to blame me for my son’s inability to attend school. Coupled with the day to day stuff of caring for child with a hidden disability and the need to ‘fight’ the system I’ve been on the knees with exhaustion. There again looking at how much better my son is, it has been worth it. However, I still feel the NHS and education need to be doing a much better job of supporting our children and us.
PS sorry for the long post; school refusal is a subject very close to my heart.
There is some very good guidance about health needs and education – LAs should be putting provision in place after 15 days absence. http://www.education.gov.uk/aboutdfe/statutory/g00219676/health-needs-education We had a good experience with CAMHS when we eventually got an appointment. My DD was diagnosed with low mood and anxiety and her attendance fell to 50%. She now accesses alternative provision on medical advice (no statement necessary). We have waved goodbye to the predicted number of GCSEs but are thankful she is still alive and finally improving after a year of clinical depression. Thinking of home ed for post 16.
Hi, Ambitious about Autism is launching a campaign in the new year looking at the reasons why children with autism miss out on school. We would like to cover school refusal as part of the campaign and I wondered whether you would be able to get in touch to talk a little more about your sons experience? If you send me an email at cbull@ambitiousaboutautim.org.uk we can arrange a time to talk. Clare (Policy Officer at Ambitious about Autism)
my son is 11. since January this year he has been refusing to go to school .to put it bluntly it put our whole family through hell. we got the gp to refer us to camhs. after 4 very quick appointments were told it was not a mental health issue but down to his learning ability and now that the problem had been identified he was expected to return to school the following day. I knew that was not going to happen. we had dealings with ewo and school but as camhs had concluded there was no mental health issues it was just put down to my son acting up and being stubborn. I ended up deregistering him from his primary school and registered him with the high school thinking after the summer holidays a new start etc he would be fine. but today he was due to start and as I feared the same has happened today. I feel totally helpless. ewo are saying there is nothing they can do, camhs are saying he has no mental health issues and school are saying I just have to get him there.
some one please help me with any advice on how to deal with this. I feel like im banging my head against a brick wall. he tells me he wants to go to school but cant?
I can completely empathise with your situation but as to what the answer is, I really don’t know. It depends on what route you want to go down, Reduced timetables to start with to get your child back to school (2 half days a week, then slowly building up) Educational psychologist to review your child (SENco at school would know about this), home educating or, if your child has an EHCP or Statement then speak to the case officer about what alternatives they have for children that are not at school, because there will others in the same situation. If you are on Facebook there is a support group that has lots of members and there might be somebody from your area who can advise specifically for your LEA. Wishing you the very best.
Dear Lorraine
This is the link for the Facebook support group https://www.facebook.com/groups/schoolphobiarefusal/?fref=nf
Best Wishes
Angela
My youngest son (aspergers) hasn’t been to school since last June – school phobia became a breakdown. He should be in Year 11 and taking GCSEs. School has been difficult for him all the way through – and he has sustained a total of four years full time education. It’s not uncommon for those with high functioning autism to have this path…. they don’t fit the profile of many schools (and certainly not 8 form entry mainstream school – which is his own chosen option)
All I can say is life is long, and:
– How many people really know what they’re going to do at 13, 16, 18 etc
– My son has done incredibly well, wanting and trying to fit a system that doesn’t fit him.
– He needs a rest. Time to stop.
– Adolescence is hard – and even harder if you’re on the spectrum (one professional described it to me recently as a ‘toxic’ mix)
– He’ll be OK in ten years – I know he will. I just haven’t got a clue what the path looks like.
In fact, I sometimes think that crashing out of the system will (once he comes to the end of this school term) give him more options. He will become a statistic and (hopefully) there will be more choice in supporting his future – rather than ‘thou shalt take GCSEs’
Hope this is useful. It’s a difficult place to be – but time and removing judgement are helping us.
Thank you. What lovely words. As you know he will be fine, my son is 17 now and is getting there – It has been hard trying to conform but time is a healer, or has been for him. As you say i hope that one day there is a more flexible system to suit all children.
Thank you.
My youngest son (ADHD, ADD) Has days were he refuses to get up and go to school and it seems to be getting worse and more often. He will soon be 16 and should be sitting his mocks in few weeks. Over the last 3 weeks he has only attended school on 5 days. Only once on time, which i believe to be because of the school still not knowing how to treat Josh and how to handle any situation. For the most part I have received a little assistance from school with regular meetings taking place. But each time we meet I feel as though I am not a good enough parent and it is me letting him down. Gradually over the last couple of years I think it has gotten worse with them not willing to support as much until now where I get nothing other than brushed under the carpet and Josh getting sent home over stupid little things.
Have I left it too long to seek help from Senco? Would they be able to come to meetings with me? What are Josh’s options? Who can I get in touch with to find out?
All people are different and at work you have to accept these difference and hopefully you are able to embrace them. If schools are supposed to be preparing kids to move on into the big wide world then why aren’t they teaching them this? Why do they think that only allowing children with physical differences concessions such as broken arms, prosthetic legs and allowing them to be different in what they are allowed to do. Everyone needs a little lee way occasionally, no matter how old they are.