I have a question to ask re “Just Checking”. I have a very complicated situation regarding my son who is being locked in his bedroom every night in his fathers home who is then denying my son has any sleep disturbances. Social services became involved and offered to install the “Just Checking” sensors in his room. The monitoring revealed frequent night wakings and as soon as Social services showed this data to my sons father he claimed to be in shock at the amount of times he was waking, They offered my son some time at a respite centre, but its closed now due to covid, on the back of this information, However my sons father then went on to claim that in actual fact the sensor was picking up on noises from outside of the bedroom and that it wasnt actually my son waking up at all!! Is the system really that unreliable that it can give false readings? I know my sons father is locking him in his room every night to avoid admitting that my son has sleep disturbances. He is refusing to get him help for the sleep disturbances. He has been diagnosed with a syndrome that causes pauses in breathing during sleep, amongst other things. He has a diagnosis of autism too. I am aware that 2 children with my sons syndrome died in their beds, so it is a real concern for me. But his dad locking him up and denying there is a problem is worrying me. I have gone back to SS and asked them to explain how it is they installed faulty equipment that was giving false data. Is there anything else I can do?
How old is your son?
It is illegal to lock someone in a room - if they are over 16 then there should be a DOLS in place and if they are under 16 it is considered restraint. It is also extremely dangerous from a fire safety point of view.
I haven’t heard of the kit from social services but you could contact the manufacturers for information re sounds outside the room triggering it and also to ask how it detects sleep disturbance.
S and I wear trackers and they record sleep too. If your son would tolerate one on his wrist that’s another suggestion…
Is your son’s sleep condition sleep apnea and if so does he have a machine to help him sleep at night? Does he use it or does he struggle with it use for sensory reasons?
I read your other post regarding your son’s condition and discovered that sleep apnea can be an issue.
I suffer from sleep apnea and, as I continued to gain weight over the years due mostly to some medication I was taking, decided to hand back the CPAP machine because the air pressure was being increased too greatly.
I’m sure you’d probably be aware if your son had sleep apnea. The sleep clinic I visited were always supportive and, if sleep apnea is involved here, I think the specialists involved would be very helpful.
Best wishes, David
Hi Melly - thank you for this. I have been raising this with social services for ages now and they wont do anything. I think what he has is sleep apnea. The syndrome he has causes sleep apnea. But his dad wont let him get tested or monitored for it, so we dont have anything conclusive yet. I have begged and pleaded with social services and his dad to get him tested. It is a real concern for me because I know 2 children with my sons syndrome died in their beds from what is believed to have been a sleep seizure causing the apnea and then ultimately suffocation. But my ex husband seems to think if he just locks him away the problem will go away. He was referred to a sleep clinic last year, but my ex husband took him to the appointment and told the doctor that he slept fine! Then social services installed the monitorig equipment which revealed he was waking frequently and then my ex said that the sensors were just picking up movement from outside his room, which is total BS.
My son is 11 and I have asked them to properly document the “restraints” that he is being kept under, but SS wont do anything. Should they have something in his EHC/care plan that documents the kind of restraints he can use ? I even got lawyers to write to them about a DOLS because we had found legal precedent for DOLS being required by a court for children under 16, and as young as 12.
I am at a loss as to what else I can do. I feel like they are just waiting for him to die .in his fathers home.
I think it is sleep apnea, but my ex keeps lying to services about it.
2 children with my sons condition died from what they think were siezures that caused the apnea and then suffocation. I have seen him sit bolt upright in the middle of a deep sleep and then his eyes are bulging like he isnt breathing. Just before it happened he was sleeping and was having what looked like muscle spasms. I have tried to report this to SS but they wont do anything to get my son seen properly by a specialist.
even before my son got his genetic diagnosis he was diagnosed with autism and my understanding is that sleep apnea is very common in autism anyway. He doesnt snore loudly, but I am sure he is waking up because he is not breathing properly and its jolting him awake. I am not an expert, but it seems to me that his dad is just trying to conceal the problem rather than seek help for it.
Hello again Lucy
Social services are very poor on occasions and I get the impression you’re going to have to shout very loudly about all this unfortunately: they don’t like getting involved with family problems I was told, believe it or not.
But the situation you’re describing seems extremely frightening and although I know nothing about the law, surely what your husband is doing (denying your son medical appointments and restraining him in his bedroom) is illegal? Speak to your GP as quickly as possible. Sleep apnea in itself is unpleasant, but with all the other problems you and your son are dealing with you don’t need any more.
Yes I have spoken to my sons GP and we had a CIN meeting last week, where finally the GP raised a concern about the sleep difficulties. We went round and round in circles on this point with social workers saying that he cant lock him in indefinitely and paediatrician saying she couldnt treat any sleep disturbances without evidence of what they were exactly. His dad has declined the offer of sleep clinic assessment and the best SS could do was offer my son a “voluntary” stay at a respite centre, that is currently closed due to Covid. They have said they can check his sleep routine when he goes to the respite centre. But I am doubtful that his dad will let him go, because it will likely prove what I have been saying all along. Its a horrible horrible situation, because for once SS are actually trying to help!
I am still learning about my sons condition and because there are so few patients with it and it is only recently discovered we are all still learning about it. I think there is only one patient in the group that doesnt have some form of sleep disturbance. All I know so far is they mostly all have some kind of pause in breathing, whether it is apnea or not, when they sleep.
The idea of locking him away when he could be in distress at not breathing breaks my heart. He is non verbal and not able to tell anyone about this. His sister tells me that he is awake about half of the time and if is due to him not breathing half of the night then this is very serious indeed! I appreciate that SS may not want to get involved in a family situation, but it is a very serious matter if his dad is effectively refusing him access to medical treatment. And i agree we have enough on our plate with his disability to be going round and round in circles on his sleep. His mental capacity is 18 months of age and it seems pretty obvious to me that he will not be in a fit state for learning in the day if he is exhausted from being up all night not breathing properly!! I am at my wits end.
I am at my wits end with this. I have been screaming and shouting about it for years and years and its actually made me ill. I am having to take therapy just to deal with the distress this has caused me. I am fear of my sons life and no one will do anything to help him. I am shocked to the core about how services are behaving. Its even got as bad as them accusing ME of having some serious undiagnosed mental health problem!!!
Keep the pressure up on social services Lucy. Although our problems are different I’ve found that they’ll offer as little help as possible. You might even find you don’t have a social worker at all, as we did here about 5 years ago. No warning was given for their withdrawal of services and I thought that a degree of trust had been created between ourselves and this particular social worker.
I wonder if your son’s sister can provide evidence regarding his sleep problem? I can’t sleep well but I know when I’ve been snoring and could report it should I have to. If there is a witness to your son’s problems then that must be good enough to get things going regarding specialists - although at this time with the virus I understand things are going to be even more difficult.
Best wishes, David
My son didnt have a social worker until I screamed at them about it! He has one now but they do keep trying to come up with excuses to drop the support. They even threatened to take him off his EHC plan last year!! The irony in my sons case is that the very first paeidatrician to treat my son was the Baby P whistleblower from Great Ormond st hospital (Dr Kim Holt). Theyve not learned a damn thing from that case! It is very sad. They have sat around twiddling their thumbs telling me they wont do anything without any evidence. They are effectively letting a disabled child slowly suffocate to death because his dad wont do anything.
it isn’t up to a social worker to evoke an EHCP. Although they have a social care and health section they are predominantly for education; written by education and reviewed by education In my experience social workers and health professionals rarely attend reviews and are very reluctant to provide written reports or contribute in any way.
There is an awful lot in his EHC plan which refers to his health needs in terms of his learning environment. They have reviewed it recently, but it is still an absolute mess. There are blank sections and it hasnt even been formally signed. WE had a CIN meeting last week and the social worker and paediatrician were in attendance It turned into a bit of a slanging match. Maybe because it wasnt an in person meeting, so everyone was talking over each other and the social worker seemed to be out of her depth and the paediatrician didnt seem to have a clue what she was talking about. The headmaster said very little. then we ran out of time and the meeting was cut short. It was a joke.
Lucy of course the learning environment will relate to his adaptions needed to minimise the affect of his condition on learning. If you don’t agree with the EHCP you have to respond within a set time frame. IPSEA and the NAS both offer advice for this .
I’m sorry the child in need meeting wasn’t well chaired. It is possible to do this even with it not being in person.
I have had a small breakthrough. Great Ormond st hospital now saying they will liaise properly with local paediatrician team to come up with a proper plan. Its taken months of me begging them on both sides. It has been and still is a terrifying ordeal.
The local government and ombudsman service have been appalling in responding to my complaint and it it has got as far as social services saying they have no concerns about my son not getting any treatment and being locked in his bedroom and that he is perfectly safe locked in every night, despite them knowing he has a history of sleep disturbances that have not been properly assessed or treated.
It really beggars belief. I just hope that I can get him treatment ASAP and not be told I have to wait another 6 months due to covid. Its like they want him to suffocate to death rather than deal with the problem.
I am beyond disgusted that a little boy with severe disabilities and complex needs can be left in this situation. He is non verbal and is not able to tell anyone what is happening to him and that he might actually be frightened when waking up in the night ands discovering he is locked in and no one is coming to help him. My stomach is in knots. Because for ages I have been told that this is a perfectly fine way to manage a disabled child when it is obvious that it is not