Autism - A personal rant.

[Green Cross Code Man]

My wife and I care for 3 children, all of which have varying degrees of disability, physical and mental. We have had experience of CAMHS and have been shocked by how little they can offer to children who aren't at the severe end of needs.
You could have almost heard the sigh of disappointment when we said the children didn't self harm, as that is pretty much the first benchmark to get you noticed. The ironic thing is when one of the children did have period of self harm CAMHS put it down to peer pressure!

Can I first say, well done and thanks for the care you show those children. It really benefits not only yourselves (but of course you incur some cost) and the children, but all society. I work in a school and what you say is so true. It is truly maddening that a child has to almost be encouraged to behave or suffer in a worse way in order to receive the help they deserve. The lack of funding for, in my opinion, clear cut cases is a national disgrace and one that I am very upset with the Tories for.

 

[Green Cross Code Man]

Be grateful hat your son actually has a TA in class, they are rare and getting rarer all the time. Lots of in class support for those with additional needs are being phased out on cost grounds. At Mrs V's school she knows two of her class should be assessed for Special Needs support, the school can't/won't do the assessment as if they are found to need additional support, there isn't any money in the budget for it.

Yes, the way funding is worked out is very unfair, it penalises the school for actually trying their best for the child in question.

 

[Questions]

If you want children who are on the spectrum in mainstream education then you have pay for them after they have been statemented. By that I mean supplementary teaching and not to the detriment of the rest of the class because of a lack of qualified staff.

 

[darkwolf666]

Can I first say, well done and thanks for the care you show those children. It really benefits not only yourselves (but of course you incur some cost) and the children, but all society. I work in a school and what you say is so true. It is truly maddening that a child has to almost be encouraged to behave or suffer in a worse way in order to receive the help they deserve. The lack of funding for, in my opinion, clear cut cases is a national disgrace and one that I am very upset with the Tories for.

Thank you for your comments, much appreciated. My wife and I are second marriage and our respective kids had grown up and flown the coup. At the point when we should have been looking forward to spending some quality time together we instead found ourselves being asked to care for two children, 12 and 10 years old. Social Services neglected to mention/notice that both girls had severe issues, partly from the neglect they had suffered and partly from the conditions they had, ADD and Neuorofibramotosis Type 1.

In the 7 years since they have lived with us I have visited more hospitals then I can probably now remember and met some wonderful, and not so wonderful, health professionals. The common theme though is their appears no joined up thinking, no-one seems to follow up on things. For example school highlighted a possible auditory processing disorder in one of the children, due to the way they were presenting at school. Tests were carried out which proved negative - and that was it. There was no, “ok, so it’s not a processing disorder, so what is it”? Just it’s not a processing disorder!

Both girls present in ways that indicate autistic tendencies, but not enough to get a diagnosis - consequently we have spent years banging our heads against a metaphorical brick wall to try and get help.

Just to further qualify our madness, just over 2 years ago we took on a 6 month old baby, who also has issues, with a rare chromosomal condition, amongst other things - this little chap has just been diagnosed as being autistic, and may in the future make use of the sort of facilities The Albion are offering!

It’s been a hard 7 years, a time that has had a lasting impression on us as a couple, unfortunately not all positive! Would we do it again - hell yeh! Sometimes you just have to stand up and be counted and try and get the best for children who have suffered and are still suffering, with little help from those that should help!

 

[Norman Potting]

Thank you for your comments, much appreciated. My wife and I are second marriage and our respective kids had grown up and flown the coup. At the point when we should have been looking forward to spending some quality time together we instead found ourselves being asked to care for two children, 12 and 10 years old. Social Services neglected to mention/notice that both girls had severe issues, partly from the neglect they had suffered and partly from the conditions they had, ADD and Neuorofibramotosis Type 1.

In the 7 years since they have lived with us I have visited more hospitals then I can probably now remember and met some wonderful, and not so wonderful, health professionals. The common theme though is their appears no joined up thinking, no-one seems to follow up on things. For example school highlighted a possible auditory processing disorder in one of the children, due to the way they were presenting at school. Tests were carried out which proved negative - and that was it. There was no, “ok, so it’s not a processing disorder, so what is it”? Just it’s not a processing disorder!

Both girls present in ways that indicate autistic tendencies, but not enough to get a diagnosis - consequently we have spent years banging our heads against a metaphorical brick wall to try and get help.

Just to further qualify our madness, just over 2 years ago we took on a 6 month old baby, who also has issues, with a rare chromosomal condition, amongst other things - this little chap has just been diagnosed as being autistic, and may in the future make use of the sort of facilities The Albion are offering!

It’s been a hard 7 years, a time that has had a lasting impression on us as a couple, unfortunately not all positive! Would we do it again - hell yeh! Sometimes you just have to stand up and be counted and try and get the best for children who have suffered and are still suffering, with little help from those that should help!

Hat taken off to both you and Mrs. dw666

 

[Green Cross Code Man]

Thank you for your comments, much appreciated. My wife and I are second marriage and our respective kids had grown up and flown the coup. At the point when we should have been looking forward to spending some quality time together we instead found ourselves being asked to care for two children, 12 and 10 years old. Social Services neglected to mention/notice that both girls had severe issues, partly from the neglect they had suffered and partly from the conditions they had, ADD and Neuorofibramotosis Type 1.

In the 7 years since they have lived with us I have visited more hospitals then I can probably now remember and met some wonderful, and not so wonderful, health professionals. The common theme though is their appears no joined up thinking, no-one seems to follow up on things. For example school highlighted a possible auditory processing disorder in one of the children, due to the way they were presenting at school. Tests were carried out which proved negative - and that was it. There was no, “ok, so it’s not a processing disorder, so what is it”? Just it’s not a processing disorder!

Both girls present in ways that indicate autistic tendencies, but not enough to get a diagnosis - consequently we have spent years banging our heads against a metaphorical brick wall to try and get help.

Just to further qualify our madness, just over 2 years ago we took on a 6 month old baby, who also has issues, with a rare chromosomal condition, amongst other things - this little chap has just been diagnosed as being autistic, and may in the future make use of the sort of facilities The Albion are offering!

It’s been a hard 7 years, a time that has had a lasting impression on us as a couple, unfortunately not all positive! Would we do it again - hell yeh! Sometimes you just have to stand up and be counted and try and get the best for children who have suffered and are still suffering, with little help from those that should help!

Again, I reiterate my thanks to you. I have a friend who heads Liverpool Council's fostering publicity. He doubles his role with his other job as a languages teacher and is simply fantastic at drumming up support through social media, radio and TV. He fosters as well. I am privileged enough to have worked with many many autistic children and those with other needs such as you describe, although I have only worked in mainstream schools. I see first hand the amazing turnaround that children like yours can experience over the years that they are cared for. Some of the most difficult children simply need a never ending amount of grace and care and in my experience, above all, need to learn that there are people they can trust. You and your wife deserve a medal!

 

[darkwolf666]

Hat taken off to both you and Mrs. dw666

Thank you, we don’t do it for thanks, which is just as well, as there isn’t much forthcoming, generally!

 

[Reinelt12]

My 10 year old son is a high functioning autistic. We are lucky in that his current school are very good and understand him. They were surprised by the diagnosis, but the more we speak to them about his traits, they seem to get it. When he goes to high school we know that could change, so we need to be prepared for that.

He also plays in my U10’s football team. That is where he struggles... he isn’t as talented as the rest of the team (in the top 3 teams in the top division) - he has hyper mobility in his knees so it hurts him to run, and so as an outsider watching you would see him wander around hardly touching the ball and looking like he hates it. Thing is he loves it, when asked as part of his Autism Emotions group where his safe place is, it’s on a football pitch. He does have a rocket of a shot on him though when he does get the ball!

Most parents don’t get it, and I hear and get told all sorts of comments from the sideline. His fault we lost (when he was on the pitch for 10 mins out of 40 and up front) - or he doesn’t put any effort in etc. I just ignore it or try to explain - we are mixed teams, I’m not changing it and the fact he is my son is irrelevant, I would say the same for any of the kids because them all having fun is the ONLY thing that is important.

Thing is, I want to be able to help him to get more touches and not be in so much pain... I’m going to try very short bursts (5 mins at a time) - with the previso he runs as much as he can during that 5 mins knowing he will come off and rest for a while. He is having physio to try to help with the hypermobility, but that will take some time to generate any results.

With instructions - everything has to be visual as his verbal comprehension is low, so any shouting from the sideline is pointless (and yet I still do it like an idiot!)

Is anyone else a coach with a similar child in their team, and if so, what did/do you do?




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[BadFish]

Sad to hear this but things will get better, we had a lady with autism living with us for 9 years and her school days were very difficult for her getting expelled twice, some schools are better than others so hopefully senior school will provide alot more support,. Out of interest are you local to Brighton and Hove?

I see this is an old thread, I hope things have improved since then.

Yes this is an old thread and I am pleased to say that things have massively improved for my boy. In fact I am amazed to report that he is currently on school camp. Something which we never thought would happen. Secondary school has been massive for him, coupled with a real understanding of himself and his condition he has come on in leaps and bounds in the last couple of years. He has a small group of friends at school and seems to be able to make better choices when he is about to melt down. We are still having the odd run in with teachers who just don't get it and there seems to be a certain type of person he clashes with...... Officious and non smiling. However the school are happy to work with us to get the best out of him and there are a number of teachers who are brilliant with him and can give advice to others.

Since my last post our daughter has been diagnosed with both Autism and Dyslexia and we are in the process of getting funding for her so she can get some assistance. My youngest son also did not get a diagnosis and as mentioned by others on here we are kind of left in limbo with how to help him. His ADHD is getting worse and the medications available are not all that effective. Our psychologist suggested that he may have something called Pathological Demand Avoidance which seems to fit well with him (a little self diagnosis going on here too). We suggested this to the people doing the assessment and they told us that they had never heard of it and more or less shrugged us off when we told them that it was part of the Australian Autism Spectrum diagnosis. So we are back on the road of finding solutions for our kids.

Thanks for eveyrone's support on this thread it means a lot to share and know that others understand. Very interesting reading this old thread about where we were.

BF

 

[Triggaaar]

Yes this is an old thread and I am pleased to say that things have massively improved for my boy. In fact I am amazed to report that he is currently on school camp. Something which we never thought would happen. Secondary school has been massive for him, coupled with a real understanding of himself and his condition he has come on in leaps and bounds in the last couple of years. He has a small group of friends at school and seems to be able to make better choices when he is about to melt down. We are still having the odd run in with teachers who just don't get it and there seems to be a certain type of person he clashes with...... Officious and non smiling. However the school are happy to work with us to get the best out of him and there are a number of teachers who are brilliant with him and can give advice to others.

Since my last post our daughter has been diagnosed with both Autism and Dyslexia and we are in the process of getting funding for her so she can get some assistance.

Funding for assistance? Don't you get the same sort of care as you would over here?

 

[BadFish]

Funding for assistance? Don't you get the same sort of care as you would over here?

Judging from the responses on this thread we are in a different situation to the UK. We have a funding system which allows us to manage funding for our kids and provide them with Psychologists, Occupational Therapists, Respite Care etc etc. https://www.ndis.gov.au/about-us We are unsure at this stage if my daughter qualifies for this scheme as she has the lowest level diagnosis of Autism. We are in the process of applying and the wheels turn slowly. My eldest however has really benefitted from the funding available and once you work out what is available and how to access the system works well. Given the strides my oldest has made from the finding I am really hoping that my daughter can access similar as I totally believe it will make all the difference to her.

My oldest son has gone from being at very high risk of being reliant on us for his whole life and/or receiving state benefits to survive to it being most likely that he will be a functioning member of society who will hold down a job and live a 'normal' life (what ever that is). I am not counting my chickens quite yet but the future is optimistic at the moment.

None of the kids have ever had any funding at school although they benefit from other children's teaching aids. (The aide in my daughters class is not wanted by the student she is supposed to be helping so only assists when necessary. This means she has time on her hand and as my daughter is receptive to her help (most are not at 12 yo) she spends a fair bit of time helping her.) This sounds like a similar situation to people's experiences on here and has been a frustration of ours throughout his schooling as the answer to the often asked question."What would be the best thing for your son?" has always been "a teacher's aid to help him regulate his emotions and make decisions early before he melts down."

I think we have a long way to go to provide a better environment for all our students in schools. My experiences as the dad of kids on the spectrum and as the teacher of kids on the spectrum is that often the solutions to problems are relatively simple while the consequences of the same problems are incredibly disruptive in the short term and damaging in the longer term.

 

[BadFish]

If anyone is interested I have been (sporadically) writing a blog about my experiences.

https://viewfromasperia.blogspot.com/

 

[Cadiz Seagull]

A true word to be said.
Hows life in Bexhill?

Bexhill is fine. Will be better when the weather finally decides to warm up!

 

[darkwolf666]

Funding for assistance? Don't you get the same sort of care as you would over here?

Don't get me started on funding - pupil premium is a joke and grossly miss-used by schools.

 

[Triggaaar]

Don't get me started on funding - pupil premium is a joke and grossly miss-used by schools.