2019
End of Jan
Reduced hours at school began. Started off as afternoons, and then since switched to mornings. School put in a referral to CAMHS, but CAMHS say they recommend the community paediatric assessment is completed first to understand a diagnosis prior to consideration for a specialist CAMHS intervention. Hmmmm!February
School arranged for a family outreach worker to see us at school. A pointless visit really, we obtained no further help and the strategies she suggested, we (and the school) were already doing.March
School arranged, off their own back, for a locum educational psychologist to come in to talk to us and the SEN team. A very informal information sharing meeting, but again, nothing new to try.We also had our first Paediatrics appointment. J engaged a little, and the paediatrician commented that she was bright and 'masked' very well. This was two years since we had last gone to Paediatrics and were dismissed as J wasn't showing any obvious signs of any non-neurotypical behaviour.
May
Our 2nd paediatric appointment. Towards the end of May, things got dramatically worse.During this time, she just didn't seem like she was J – she was different, her demeanour was different, she seemed to have a glazed look in her eyes. We were seriously at our wits end and had no idea where to turn, so one night we called the out of hours Social Services. It was just a number I came across when looking online.
Although I spoke to a lovely lady, it was pretty much a waste of time. Sure she listened and sympathised, but said there wasn't much she could do, but would talk to the (Multi-Agency Safeguarding Hub) MASH. We never did hear back from them! We also called the CAMHS crisis team, without much assistance either. It was all extremely upsetting!
Towards the end of May, the violent episodes continued with literally no let up. So, at pretty much breaking point, we decided to go down to A&E at the tail end of another serious meltdown. Not sure it was our best decision to be honest. After taking some detailed history and J becoming agressive with staff there, which was extremely distressing to say the least, they questioned 'psychosis/schizophrenia'.
Towards the end of May, the violent episodes continued with literally no let up. So, at pretty much breaking point, we decided to go down to A&E at the tail end of another serious meltdown. Not sure it was our best decision to be honest. After taking some detailed history and J becoming agressive with staff there, which was extremely distressing to say the least, they questioned 'psychosis/schizophrenia'.
About five hours later, still at the Hospital, we were visited by a CAMHS Crisis Nurse Practitioner, who pretty much brushed off psychosis saying in all her years of working, she had never come across a 7 year old with it!
By this time J had calmed right down and the Nurse didn't get to witness any of the extreme behaviours, instead seeing a lovely little girl, smiling and chatty!! The art of “masking”.
June 11th – a day we will NEVER forget, the day after my hubby’s birthday and the day we had to call the Police out on our daughter. This was a pretty serious incident incident indeed.
Later that afternoon a social worker came out to see us – lovely lady – she couldn't believe we hadn’t had any help up till then! She herself put in an emergency referral to CAMHS as she was very concerned about J's mental health behaviours.
June
Another family outreach appointment arranged through school, again pretty pointless. During this time, we also completed our 'bit' on the request for an EHCP form. All information was then collated and sent off by the school.June 11th – a day we will NEVER forget, the day after my hubby’s birthday and the day we had to call the Police out on our daughter. This was a pretty serious incident incident indeed.
Later that afternoon a social worker came out to see us – lovely lady – she couldn't believe we hadn’t had any help up till then! She herself put in an emergency referral to CAMHS as she was very concerned about J's mental health behaviours.
The next day we had a visit from a CAMHS crisis practitioner. J didn’t even acknowledge him, and proceeded to go into meltdown.
At the end of his visit, which mostly involved him witnessing J’s extreme behaviour, which we as parents were seeing daily, he called the consultant psychiatrist at CAMHS and she recommended medicine to help J with her anger and erratic emotions and to some extent give us some respite with it all.
We collected the medicine – a low dose of Resperidone – that same evening!
Towards the end of June the Social worker visited J in school (with our consent), and we had another visit from the CAMHS Crisis Worker. J still refused to engage and instead hid upstairs, while occasionally showing her displeasure by throwing stuff down the stairs.
June 21st – our first appointment at CAMHS with the Consultant Child & Adolescent Psychiatrist. Had no idea what to expect! It took J half an hour to walk into the building, a further 15 minutes to walk (or in her case climb on the bannisters) to the top of the stairs and then another twenty minutes for her to even enter the office... you get my drift! She was reluctant to say the least!
Towards the end of June the Social worker visited J in school (with our consent), and we had another visit from the CAMHS Crisis Worker. J still refused to engage and instead hid upstairs, while occasionally showing her displeasure by throwing stuff down the stairs.
June 21st – our first appointment at CAMHS with the Consultant Child & Adolescent Psychiatrist. Had no idea what to expect! It took J half an hour to walk into the building, a further 15 minutes to walk (or in her case climb on the bannisters) to the top of the stairs and then another twenty minutes for her to even enter the office... you get my drift! She was reluctant to say the least!
Again, history was taken, J refused to talk, give any eye contact whatsoever and was extremely quiet, though we are sure she listened to everything being said!!
Two days later, another serious incident at home, whereby we thought J had had some sort of seizure as she appeared to collapse after a meltdown, was non communicative and just seemed 'out of it'. So, we called the paramedics out, who were great, but as soon as mention of taking some blood was made, she 'came to' very quickly(!). They were very understanding and helpful, and needless to say no bloods were taken! Looking back now, I wonder if this was a 'shutdown' of sorts?
At the end of June we attended an ASD workshop by an ASD Pathway Practitioner at our Community Health Clinic, who also was involved with CAMHS. After talking to her at the end of the workshop, we asked if it is possible to have some one to one sessions. She spoke to the Psychiatrist at CAMHS we have been under, and they offered us six sessions of parental support.
June is when we also received a letter confirming the speech and language referral had been accepted with an appointment for September – so a 3 month wait! It would definitely have been longer had we not agreed to take any cancellations that may arise or informed them we would be willing to travel anywhere.
End of June the CAMHS crisis worker visited us again. He managed to get J to talk to him this time, albeit briefly.
He explained that although J doesn't fit the 'whole' criteria for ASD, her PDA profile is definite but could only be diagnosed alongside ASD as PDA is not currently recognised as a stand alone diagnosis under DSM5. He felt very strongly that J needed help with her PDA, that need overriding any possible doubts that there may have been regarding her ASD traits.
Our final EHCP was finalised this month too, with her current school listed as her provision until such times as a place becomes available at one of the specialist schools we have visited. Hopefully a new environment sympathetic to her complex needs will give J everything she needs to thrive.
Two days later, another serious incident at home, whereby we thought J had had some sort of seizure as she appeared to collapse after a meltdown, was non communicative and just seemed 'out of it'. So, we called the paramedics out, who were great, but as soon as mention of taking some blood was made, she 'came to' very quickly(!). They were very understanding and helpful, and needless to say no bloods were taken! Looking back now, I wonder if this was a 'shutdown' of sorts?
At the end of June we attended an ASD workshop by an ASD Pathway Practitioner at our Community Health Clinic, who also was involved with CAMHS. After talking to her at the end of the workshop, we asked if it is possible to have some one to one sessions. She spoke to the Psychiatrist at CAMHS we have been under, and they offered us six sessions of parental support.
June is when we also received a letter confirming the speech and language referral had been accepted with an appointment for September – so a 3 month wait! It would definitely have been longer had we not agreed to take any cancellations that may arise or informed them we would be willing to travel anywhere.
End of June the CAMHS crisis worker visited us again. He managed to get J to talk to him this time, albeit briefly.
July
Middle of July we hear from the local authority confirming they have received a request from J's school for an EHCP. We also had another CAMHS appt (no. 2.).August
Beginning of August, we had confirmation from the Local Authority that they were proceeding with the assessment of J's EHCP. How could they not we thought!
We were also assigned a Family Outreach Worker from the Early Help Assessment Team, who advised us on the possibility of applying for DLA (disability living allowance), which we took up and submitted (and since been granted). J took to her instantly and had no problems in opening up to her. Funny isn't it who kids take to and who they don't...
Middle of August we had an EEG test booked in for J, arranged by CAMHS. An EEG test is a recording of the electrical activity of the brain. Report was sent to CAMHS after, but no issues detected. End of August another follow up appointment with CAMHS .
We were also assigned a Family Outreach Worker from the Early Help Assessment Team, who advised us on the possibility of applying for DLA (disability living allowance), which we took up and submitted (and since been granted). J took to her instantly and had no problems in opening up to her. Funny isn't it who kids take to and who they don't...
Middle of August we had an EEG test booked in for J, arranged by CAMHS. An EEG test is a recording of the electrical activity of the brain. Report was sent to CAMHS after, but no issues detected. End of August another follow up appointment with CAMHS .
September
Rolling into September and J began Year 4 and had a Cognitive Assessment (Wechsler Intelligence Scale for Children) - also known as WISC Assessment, arranged by CAMHS.
J scored extremely highly (97th percentile overall) although processing deficiencies were highlighted, scoring at just the 5th percentile. We also had our SALT (Speech & Language Therapy) appointment, which lasted approx two hours. Like the WISC test, this showed an extremely low processing speed.
During the month of September, it almost seemed like the meds were wearing off slightly and we spoke to CAMHS, who advised us to try doubling her dose, which we did, with immediate apparent benefits.
At the end of September the Educational Psychologist (EP) went into school to observe and provide his report, which contained advice to the LA (Local Authority) as part of the statutory assessment process. A few days after, we met with him at the school to discuss some great ideas which would go on to form the bulk of J's EHCP.
Middle of October and another CAMHS meeting. The Consultant Psychiatrist discussed the results from the Conners Rating Scale which both we and the school had completed independently. J scored highly! ADHD medication was discussed at length and prescribed. Getting J to take it took a while, but she started it properly after a week or so.
We then had an appointment with a senior Consultant Community Paediatrician specialising in ASD and ADHD/complex disorders. J refused to enter the room and showed perfect PDA etiquette!!
Our EHCP went 'to panel' at the end October 2019, and we were granted a Statutory EHCP with specialist provision if we wanted.
Another appointment with CAMHS at the beginning of November, where we updated them about the ADHD meds and the very positive impact they had had.
During the month of September, it almost seemed like the meds were wearing off slightly and we spoke to CAMHS, who advised us to try doubling her dose, which we did, with immediate apparent benefits.
At the end of September the Educational Psychologist (EP) went into school to observe and provide his report, which contained advice to the LA (Local Authority) as part of the statutory assessment process. A few days after, we met with him at the school to discuss some great ideas which would go on to form the bulk of J's EHCP.
October
Beginning of October we had a meeting at the school re the draft EHCP with the SEND Statutory Services Team. The Head of J's school was in on the meeting and made it very clear that the school was struggling to cope with her.Middle of October and another CAMHS meeting. The Consultant Psychiatrist discussed the results from the Conners Rating Scale which both we and the school had completed independently. J scored highly! ADHD medication was discussed at length and prescribed. Getting J to take it took a while, but she started it properly after a week or so.
We then had an appointment with a senior Consultant Community Paediatrician specialising in ASD and ADHD/complex disorders. J refused to enter the room and showed perfect PDA etiquette!!
Our EHCP went 'to panel' at the end October 2019, and we were granted a Statutory EHCP with specialist provision if we wanted.
Another appointment with CAMHS at the beginning of November, where we updated them about the ADHD meds and the very positive impact they had had.
November
Middle of November we had a short notice appointment back with the community Paediatrician.
Along with our recent ADHD diagnosis for J through CAMHS, we now had an ASD diagnosis with PDA (pathological demand avoidance) traits. We knew this was coming as it was so evident to us in her behaviours.
He explained that although J doesn't fit the 'whole' criteria for ASD, her PDA profile is definite but could only be diagnosed alongside ASD as PDA is not currently recognised as a stand alone diagnosis under DSM5. He felt very strongly that J needed help with her PDA, that need overriding any possible doubts that there may have been regarding her ASD traits.
Our final EHCP was finalised this month too, with her current school listed as her provision until such times as a place becomes available at one of the specialist schools we have visited. Hopefully a new environment sympathetic to her complex needs will give J everything she needs to thrive.
December
In December '19 another serious safeguarding issue at the school meant that they excluded J for 3 days. Needless to say we had come to the point where mainstream just wasn't working out for J and despite the school's efforts, they just couldn't accommodate her and her complex needs anymore, so we were advised by the LA to take her out. She then received tutoring and mentoring support until we finally found a suitable school!
Keep Going!
The one piece of advice we received was that "those who shout the loudest will get heard". In other words, never be afraid to pick up the phone/or write that email to follow up what you want to happen. You may feel that you are pestering too much, but you really aren't! Document everything, and I mean everything too! It will really help in the long run.
I really hope this insight helps! I'm by no means a professional, just a mum trying to raise awareness of PDA and sharing what helps us as a family.
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