Have you ever been at the point where you are literally holding the phone in your hand, ready to make a call that will take your beloved child away from you forever? Even knowing that this phone call will bring an irreversible hell into your life, that you may never recover from? A point in your life where you cannot help but wish for an end to it all, just to stop the misery that your life has become?
I can honestly say that the last 6 months have been the most emotionally draining, exhausting, and hellish time that I have known so far. We came to a point we never thought we would end up, and I hope that we never will again – but I am realistic enough to know that we may very well be there again one day.
For the last five years, we have been working hard to help our son – helping him to be the best that he can be, to try and overcome those issues that are stopping him from doing what he wants or needs to do. We have consulted with and used the services of paediatricians, occupational therapists, speech therapists, dietitians, doctors, homeopaths, naturopaths, chiropractors, psychologists, behavioural therapists, respite carers, assistance dog providers, autism advocates and specialist education staff. We have tried mainstream therapies, traditional medicines, and even ‘out there’ therapies in an effort to make life easier for BuddyBoy and the rest of the family. We have spent countless thousands of dollars on ‘professionals’ (some of whom really weren’t), toys, gizmos and gadgets which were supposed to help him but were either ignored or broken, and most of which did nothing.
A couple of things did give us some gains. Going gluten and dairy free made a huge difference in our lives (ask me if you’re interested – I’ve got eight pages of notes I can send you). Relationship Development Intervention (RDI) gave us the framework for a beautiful relationship with our boy, and gave him the experience that sometimes, people can be FUN. The IonCleanse (by AMD) footbath has given us a huge increase in comprehension and speech, as well as more affection. Overall however, in the five years that we have been working hard, our son has only progressed about one year developmentally. Healthwise he is slightly better off today than he was five years ago. Behaviourally, he is much, much worse.
His last PANS / PANDAS flare which started in November 2015, saw him take his self-harm to a new level. He was no longer happy to just slam his head repeatedly into the floor (or wall, or door, or window), but he started biting himself. He now had teeth marks all over his hands, wrists and lower arms, gouges where he had broken the skin, and was covered in bruises and scabs. His tolerance level became virtually non-existent, and the slightest thing would set him off. He also started finding new players for his ‘games’ – his little brother was now a regular target, as was one of his older sisters and of course – Mummy. We never knew when he would erupt, and lunge at us to pinch, gouge, scratch, bite, hit, kick or do anything else he could to hurt us. My mum was the victim of an attack with a pair of scissors, after which time we monitored all sharp objects carefully. His teacher started having to wear protective gear on her arms as she was also a regular recipient of his attacks.
Our family was worn out, exhausted emotionally and physically, and we were starting to fall apart. We finally decided that our only option left was to try pharmaceutical drugs, so we got referrals for a paediatrician, and waited for the appointment. That paed was reluctant to prescribe any medication – we have a family history of allergies and intolerances to a lot of medications (and other things), and BuddyBoy has always reacted to everything. She wanted him to be an inpatient in a hospital so they could safely try drugs on him there. We’re still on the waiting list for that (it’s been nearly five months).
We then waited for an appointment with a second paed. He suggested Risperdal (Risperidone) in the hopes that it would calm BuddyBoy down, as well as help him sleep. We started him on a low dose (and gradually increased), and waited for the fall-out, which didn’t take long. After 6 days, we had a little boy who was virtually comatose, refused to eat, had severe stomach pain and nausea due to constipation, was afraid of the dark and the bathroom and needed someone by his side constantly. He was not hurting anyone, but we were hurting to see him like this. We stopped the medication and the aggression returned, so we tried the tiniest dose we could (a quarter of his previous dose and about one-sixth of the full dose that the paed had prescribed). He still experienced nausea and constipation on this dose, but every time we took him off the Risperdal, the aggression returned full force.
Our follow-up appointment with the paed was interesting. He had never seen these side effects before (although I did warn him that my child would be different to what he was expecting), and said there were no other medications we could try. Wow.
We ended up deciding to trial the tiny dose for two months to see how it would pan out, as the paed had no experience to help with this at all. So we spent the next two months giving him the medication and managing the constipation. His anxiety lessened, but to this day we still cannot get him in the bathroom (this is the boy who loved being in the bath tub). His constipation eventually got better, but the effect of the Risperdal started to wear off. The aggression was returning – where previously we could see a definite difference when he was on it, now we couldn’t. We took him off it for a week and there was absolutely no difference at all.
We endured two weeks of hell during the school holidays (one week with meds, the other without). He would attack his little brother without warning, as well as the sister he had previously targeted. My arms and hands were bleeding, had strips of skin torn from them, and were black and blue – thankfully I was able to wear long sleeves most of the time to cover them up. He refused to wear a nappy and would deliberately pee on his floor, bed, anything, as an act of defiance. Our house stank like a urinal, and he started smearing poo again which didn’t help in that regard. He was going to sleep between 3 and 4 am, and up again anywhere from 7am to 11am. I simply couldn’t do it anymore.
At night I would sob myself to sleep, and hubby was hanging on by a thin thread. We discussed every possibility we could think of – the one that made the most sense was for us to split the family up, so that the other kids would be safe from their little brother. We planned how we could have two households that we would have to take turns in, to look after BuddyBoy and the others, and so that we could get a little bit of a break from living with the monster that our son had turned into. Some of you will have flinched at the word monster, but if you had seen the rage and lack of any feeling in his eyes when he attacked me one day, you would understand why I deliberately used that word. Unfortunately, we simply couldn’t figure out how to pay for two households, as we are struggling to make ends meet with just one.
A few weeks before we had finally started getting some assistance from the Department of Health and Human Services, and they were working on paperwork for us so we could get on the waiting list to get on the waiting list. Yes, you read that right – there is a waiting list that you are placed on, before you can get onto the waiting list to hopefully get support. They had advised me that if we were struggling, the only thing we could do would be to inform Child Protective Services, as there were no other help services available for us right now. My son was too severe for the respite care facility, even if we could afford it (around $400 per night). The ball had started rolling with a small amount of funding for in-home respite care, but at this stage we hadn’t gone through all the stages so weren’t able to access it in a hurry.
One day was particularly bad, and I had to ring my SuperHubby to come home as I could not continue like this. We had thought, talked, prayed, and failed to come up with any workable strategies. The medication was either not working, or giving him bad side effects. We decided to call Child Protective Services, and tell them that we could no longer safely look after our son, or our other children, due to his behaviours. We had failed.
Please don’t judge us if you haven’t lived it. Please don’t judge other parents if you haven’t lived with their children. What we show to the outside world, is NOT what we live every day, and every night. Sometimes the only thing holding us together is sheer determination, and the support of other Autism parents. We have to fight every single second of every day – fight for our children to get the help and support they need (and no matter how hard we fight, that often doesn’t happen); fight for them to be able to function in this world, for us to get any help, for the rest of our family to live a shadow of a ‘normal’ life. We have to fight our children to help them overcome their sensory and health issues, to get them to eat, to sleep, to school, to wear clothes, to do anything that most other parents would never even consider as it is ‘normal’ to them. We have to fight misconceptions, judgments, good intentions and sheer ignorance.
We didn’t ring CPS. We decided to do what they would do if we relinquished our son into their care – we drugged him. We increased his dose of Risperdal and are trying to manage the side effects, knowing that Risperdal is a medication linked to brain shrinkage, growth of breasts in boys, weight gain (which has already started even though he eats very little), and diabetes, plus a list of other nasties. Ironically enough, someone was concerned enough to ring CPS and raise a flag on our behalf, but as we are tied in with a number of government services now (after years or trying), that has apparently appeased them.
It is hard to share things so personal in such a public forum. I do it in the hope that it raise awareness of our situation, because we are not the only ones who live like this.