Last month, I wrote a post about my son’s experiences at school, and that I had pulled him out of school temporarily. If you missed that post, head on over to “Too special for school” and read it now.
About a week after publishing that post, I received the “something happened” letter from school, along with a copy of what I assume was a screenshot of the incident being reported electronically. This written version was different to what I had been told over the phone by the acting principal, and it still left me with more questions. This version matched more closely with what I knew of BuddyBoy’s behaviour at the time, but there was no mention of any possible triggers or antecedents for his behaviour. The school had been asked to make recordings in a STARR chart (Setting, Trigger, Action, Response, Result) for the purposes of analysing BuddyBoy’s behaviour while at school, so this information should have been available for the report.
Over the two weeks of school holidays, I became more and more concerned about sending BuddyBoy back. Towards the end of the last week, we went for a drive to his school. A block away, he started wringing his hands – something I’d never seen him do before. He looked rather anxious as we drove along the street that his school was in. When we parked the car outside the school, he pushed at me, as if to keep driving the car. Daddy asked him if he could see the school, but BuddyBoy wasn’t responding. He kept pushing at me, and looking very anxious, so finally I told him that school was still on holidays. He stopped then and looked at me, so I repeated it and said, “say Bye Bye to school”. He normally needs a bit of prompting for saying Bye Bye, but this time it came shooting out of his mouth quickly and loudly, and he waved vigorously. He looked rather relieved when the car pulled away and I told him he wasn’t going back. Maybe I’m overreacting, but I’m going with my gut on this one.
I have officially pulled him out of school and enrolled him in homeschooling. I have contacted the school with all my concerns (all five pages of them) and will be having a meeting with the Acting Principal in the next few weeks to discuss them. Interestingly enough, at the end of Term 2, the previous Principal was suddenly seconded to another school, with an Acting Principal brought in for Term 3. I was told by the Principal before she left that she would definitely be back. She has however, now been appointed permanently to the other school, and the position of Principal for BuddyBoy’s school is being advertised for permanent placement by 2017. Parents also received a letter advising us that whilst the investigation into allegations of abuse at the school had been concluded, a separate allegation related to, but not part of the previous investigation, would now be investigated.
Where does this leave us? Well, as homeschoolers we get no ‘support’ educationally. We will no longer have the Behavioural Team involved, so no more Occupational Therapy or Speech Therapy support (we had limited sessions approved). The government workers that we are tied in with, are concerned about not having BuddyBoy at school, so in some respects I’m feeling some pressure there. We had a limited amount of funding allocated to us for respite care (which has to be in our home while we are home), but we’ve been informed that we cannot use this funding for care during school hours. I cannot take BuddyBoy with me to pick up my other two children from school, so Daddy has to leave work early every day to do the school run. I’ve had to cancel any appointments that can only be held during the day, and have to wait for the late afternoon when Daddy can watch BuddyBoy.
Yet BuddyBoy is thriving. He has become much more affectionate. He is listening to what I say, and quite often following instructions. When I see him starting off on a tantrum I can often pull him out of it (unlike a full on meltdown). He has become our little parrot – he repeats most things we say, and is also speaking a lot – with WORDS. He is using Please and Thank You, often without prompting, or when I remind him to “speak nicely”. He is pointing to a couple of PECS cards as well as using their words – previously he refused to use PECS at home. He has been helping me unstack the dishwasher, stack the washed dishes in the dishdrainer, and put the clean washing in the basket from the line. When he drops something, he often picks it up – I wish I could get the rest of my family to do that! He is learning to wait patiently – often for 5 or 6 minutes at a time, using a visual timer.
He is not a model child – he still has a lot of moments where he tries to attack his little brother or one of his sisters. On a couple of occasions he’s given me bruises, but most of the time he has refrained from hurting anyone else. He is still hurting himself, but in less drastic ways (no blood). Most of the time he’s wearing a nappy, whereas previously we had days and days where he would not wear one, and often just squat on the nappy to wee on it. He’s even sat on the toilet a couple of times quite happily – not to use it, but it’s certainly progress. His sleep is no better, and his OCD is driving me insane – as we’re lessening the Risperdal dosage the OCD is coming back full force. He spends nearly all his day watching DVDs or Youtube and only rarely ventures outside. He is however happy to have a bath again – something that we have missed since he’s been on Risperdal.
We decided to pull him off the Risperdal completely. It caused him to become constipated from the very first, and with his current, very low (half of his target) dosage, he has become blocked to the point of not being able to urinate. We had to put him on laxatives which did virtually nothing to relieve the constipation, and our poor boy was in pain for quite some time. The effects of the Risperdal also wore off within 2-3 weeks, and we would then have to up the dosage. He missed his dose one day, and had severe withdrawal the next day – something that his paediatrician had told us would not happen due to the low dosage he was on. We are waiting to see a new paediatrician next month, and shall see what she recommends – in the meantime, we are doing a very slow reduction to avoid the withdrawal.
BuddyBoy is finally in a place where he can learn new skills and develop further – as long as we have the time, energy, patience and knowledge to help him. He will be turning 8 next month; developmentally he has been stuck at 2 for the last four years, but we are looking 3 in the face now. We have decided to get help from our RDI (Relationship Development Intervention) therapist, who has been the only one who ever really understood BuddyBoy and could help us to help him. Therapy costs money – something we ran out of a long time ago. We’re doing some fundraising over the next few months to help cover costs for the RDI therapy, a ‘steamroller’ to provide deep pressure whenever he needs it, fixing his iPad and iPod, and if we’re fortunate enough, to cover Gemiini speech therapy.
If you’re able to help us out at all, you can make a donation here: https://www.mycause.com.au/page/138567/therapy-for-alex
We’d also appreciate any shares of our fundraiser to spread the word as far and wide as possible!
There’s some nice gains there. Something to build on. As always I am in awe of your hard work, undying love and dedication.
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