That’s right, the hard faced “I’m coping fine” mother threatened to place my son into care. It’s been so long since my last update. Clearly I suck at this regular blogging malarky. I am not going to deny that fact. However things are a clearing up a bit now. I feel like I can update even though we’re very much in limbo waiting on things happening now.
The good news – Leon has been cleared of having further neurology issues. We’d thought the eye rolling might have been related to epilepsy but we’ve now seen two neurologists who are both saying it’s absolutely not that.
The not so good news. A large proverbial pile of shit hit the fan about 2 months ago. I got to breaking point and threatened social services that I would consider placing Leon in their care unless either CAMHS (Child and Adolescent mental health service) assessed him pronto or support from them was provided. To let you understand, Leon up until around August of last year was a very calm content boy happy to stim in his soft play area or in the garden, and very rarely a demanding child. Of course he had meltdowns but nothing like he’s been having recently. He was referred to CAMHS in November of last year (2016) He was “Urgently” referred actually.. by the Educational Psychologist, the head teacher, his own teacher and his pediatrician. It was an urgent referral as I am a single parent, he shares a room with his brother. At the point of referral he was hitting, kicking, headbutting and biting everyone (even strangers, people in school etc) randomly and unpredictably. He was hurting himself, battering his legs off bars and stairs and walls, his own hands and arms were covered in bite marks and bruises he’d given himself. He wasn’t sleeping. We were all absolutely shattered physically and emotionally. His brother was often in danger of his outbreaks as they share a room. In my mind, I expected urgent referral to be 2-3 months, absolute worst case scenario.. How wrong was I?! Only about 7 months out. Thats right his referral in November last year wasn’t looked at until August – 10 months down the line, even then they never actually met Leon until October. And I’m absolutely sure my threat to place him into care had a huge part to play in them eventually coming out. It’s absolutely disgusting that in this day and age in the NHS vulnerable children are being left this long with severe mental health issues. We’re getting somewhere though.. I’ll mention more in a bit.
Second complaint has been with the council.. firstly their school transport service. The transport assistants are absolutely lovely and I don’t fault them at all. However there had been two incidents with Leon and obviously they need to report all incidents. The first involved Leon hitting and kicking the drivers console in the car whilst the car was moving. The second involved him hitting a child and then hitting the escort in one of his meltdowns. I got a letter from the council stating I was to sit Leon down and discuss with him that his behaviour has been unacceptable and that he cannot behave that way in the future. Now I absolutely understand it is unacceptable.. however Leon is a severely autistic non verbal child with no understanding whatsoever. We called the council to let them know about Leon and his disability incase it was a generic letter that was issued. The lady (Very polite term for the absolute scrotum faced woman that covers the school transport organisation) informed us she’d called and spoke to the school beforehand and was aware of Leons difficulties, and still expected the sit down. So we got off the phone and phoned the school. School have assured us his transport will not be affected and they’ll most likely arrange a different escort for Leon (previously he has had the SFLA’s “Support for Learning Assistant”) The current escort has informed me she thinks she’s switching Taxi runs so it sounds likely that this might be the case. That was the first issue.
The second issue I have with the council is with the housing department. Apparently my local housing department don’t see autism as a medical issue. I have asked them to clarify this in writing but to no avail! Currently Max with ADHD (Loud, enjoys TV, games, music) and Leon with severe autism (enjoys quiet, dark rooms, sensory lighting) are both sharing their room. All the specialists involved agree they need to be separated. Max for his own safety as he is currently in danger from his own brother. And Leon so he has a quiet calm room to retreat to as right now there just isn’t one. I also want to apply for funding for a safe space structure to be placed in Leon’s room. Right now with them sharing that is just not possible. We have handed in copies of written letters from both childrens psychologists, the paediatrician and both schools confirming that they need the extra room as a medical priority. The council have agreed to put me on Band 2 without medical priority. It is high enough up the list however they aim to fill the house to the best need. Therefore, if anyone with more than 3 people in the house apply they will get priority. Practically making my chances non existent! I have considered going private, but I just feel I couldn’t deal with being told I need to leave. I’m also worried about when Leon gets older incase he causes any damage. At least the council will be somewhat understanding to his disability. So now I need to gather all my evidence, and firstly appeal the band decision – failing that I’ll be contacting Local MSPs.
Aaaaaaaand breath.. Up to now He’s been seen by CAMHS 3 times. The first two times he really was a little sh#%. Done all the worst behaviours in front of her very eyes. The last time she seen him in CAMHS office and he was good as gold. She really couldn’t believe it was the same boy. They agree he needs medication as his outbursts are inconsistent, sporadic and unpredictable. She came to our home and his school to observe him. CAMHS want to rule out ADHD firstly. I don’t think it is ADHD for a split second as all his behaviours are sensory seeking, but he’s going on a trial for treatment to rule it out. And if/when the trial doesn’t work he’ll be put on Risperidone. I have never heard of this, but apparently it’s used to treat schizophrenia and symptoms of bipolar disorder as well as extreme irritability in Autism. Sometimes we actually questioned if Leon might have Bipolar disorder – as he gets extreme highs and extreme lows. I mentioned before about his manic laughter at times. He can be sitting daydreaming, staring into the distance and he’ll start manically laughing. It’s adorable but slightly unsettling at the same time.. and it can go on for a long time. But equally the opposite happens. Sitting smiling, looking like he’s enjoying whatever he’s doing and then a fuse blows and he’s trying to kick out or bite you. That’s where we are on the medication front. He’s been given some support from social work. He has currently been awarded every 2nd or 3rd Saturday (I think) from 10am – 4pm in a secure play unit. This is ideal for us. I feel horrible for admitting this but I feel so much mummy guilt that Max misses out on loads of things because his brother just will not manage them. I also feel guilty for feeling guilty, as it’s most definitely not Leon’s fault. Being an ASN mummy has so many difficult compromises that we make, but it’s a difficult pill to swallow when you realise your other children are making compromises too.
So in short, this is where we are right now. We’re trialing medication. The school are incredibly supportive. We’re preparing to fight the council to get actual priority for an extra room. And I should be getting every 2nd or 3rd Saturday to do something out of the ordinary with Max, whilst Leon gets to play in a special unit for a few hours. Far from sorted of course, but a much more supported place than we were before, and if I’m absolutely honest.. I’d threaten to all over again to get him what he needs as that’s what we have to resort to under this government unfortunately and time’s are unlikely to change anytime soon.
If you’d like to know more about autism – Check out this link