Thursday, 20 March 2014
Doctor, Doctor, we need help!
"He has autism. He's non-verbal and doesn't understand what you say to him". These are my opening lines whenever we visit any kind of health professional. Yet, in the majority of cases, I may as well be speaking a foreign language for the impact it has on their treatment of my son. They all seem to carry on talking to him like he should understand.
I absolutely dread any kind of medical visit. Doctors, dentists, hospitals - they all have the same impact on Declan because he just doesn't understand what it happening. It doesn't matter how many visuals I use beforehand to try and explain what is going to happen, he either just doesn't take it in, or won't accept it is happening. And his response is always the same, total meltdown and screaming the place down.
Like most parents of special needs kids, we are frequent visitors to the local hospital to see a variety of specialists. It always starts off well. He will happily walk up to the building, wait patiently at reception with me, and enjoy himself in the waiting room because it's full of toys. Part of me thinks he must believe he's at some sort of playgroup, and that's why the next bit freaks him out so much! Every appointment kicks off with a height and weight check and this is where it all starts to go wrong. As soon as we walk into the little room where this is done, he remembers it and kicks off. The scales are actually a little metal chair that he is meant to sit in. In all honesty it does look quite daunting in that tiny room - like a minature electric chair really! It isn't the most enticing of things. And when I try and take Dec anywhere near it, he screams, and wriggles and pulls away from it. Some nurses will be quite understanding, and just take an approximate weight due to him not staying still and being so distressed. Some are so persistent it can take a very long time. One time, I had to sit on the chair myself holding him, and then sit on it again by myself, and they then did some sums to work out his weight!
But this is only part one - next comes the height! "Ok he just needs to stand with his back right up against the wall, and his ankles together and right to the wall, and his head against the wall, and we'll bring this bit of metal down on his head". Oh is that all!! That's a lot of instructions for a normal four year old, but my boy is not going to understand a word of it. So I set about trying to hold him against the wall, whilst pushing his feet together and his head back - all while he screams and screams and screams.
Dec is in full meltdown. And once he is in meltdown, it's near on impossible to bring him back down in an unfamiliar space. And we haven't even been in to see the specialist yet! So I usually give him a drink and a snack to try and calm him down for five minutes as we head in to the doctor's room. Again, I give my spiel. "He is autistic, non-verbal and doesn't understand. He hates being weighed and measured and is having a hard time with it all". And so we continue to try and talk about Declan, while he clings on to me tightly, crying and wanting to go home. I can't concentrate on anything other than his protests, and I am never able to get out all that I want to say or ask, and I haven't a clue what they say to me either. After even more meltdowns while they try and check his heartbeat, blood pressure and head circumference, I usually leave the office with a full on headache and in a daze, totally indifferent to anything that has been said or suggested to me.
Dentist visits have been the same, totally fruitless and stressful experiences for everybody in the clinic at the time. At the dentists he won't even settle in the waiting room. As soon as we walk in there he screams - and dentists never run on time do they? Up until recently we had been taking Dec and his sister to the dentists together. We were hopeful that his sister's calmness would show him there was nothing to be afraid of. It has had the completely opposite effect. His anxiety has rubbed off on his sister, and she is now scared stiff of the whole thing. We did two visits to our family dentist in the space of six months. We explained his situation but the dentist made absolutely no concessions and just tried to do what she would normally do. The first time, I swear he would not open his mouth at all, yet she said that she had seen his teeth and they were fine? The second time was even worse, yet again she said there were no problems. But we had two concerns. Firstly, we couldn't believe she had seen his teeth enough to make that judgement call. And secondly, what would happen if he was really in pain and needed treatment - how on earth would she do that?
It was then that I found out about the Special Needs Dentist who is specifically trained in treating non-verbal autistic children. Could this be the answer to our prayers? I was seriously sceptical that it could be any different, but set about trying to get a referral for Declan. About 6 weeks later, we had our first appointment. "Don't worry", the receptionist had said on the phone, "She is very good at dealing with autistic children. You really have nothing to worry about". Did that do anything to ease my mind? Of course not!
There are times when you desperately want to be proved wrong and unbelievably this was one of them. This dentist was fantastic. Dec was calm in the waiting room, because it was at the back of a large clinic away from everyone else. We were the only ones in there. When we went in, she told us not to sit in the dentists chair, he was to sit on my lap and we were to take five minutes for him to just get used to the new environment. She got on her knees so he could see her face and started talking to him very slowly. She then got her rubber gloves out. Instead of putting them on straight away she gave them to Dec to touch and get used to. She then put them on and let him touch her hands for a while. She then got a new toothbrush out, and started rubbing the brush over his hands and his cheek so he could feel that it didn't hurt. She got a big cuddly crocodile out, opened its mouth and it had a full set of teeth. Helping Dec to hold the brush, she got him to count the crocodiles teeth along with her. All of this was done very slowly and in Declan's time. And so, when she took the brush and put it near his mouth, he slowly opened his mouth and she was able to check his teeth while counting them at the same time. It was the most amazing thing I had ever seen. Not only did Dec not cry once, he was totally compliant the whole time. It was totally stress free for him, for me and for the dentist.
In an ideal world, when I take Dec to any type of medical appointment and tell them that he is non-verbal with autism, it would trigger a whole different type of appointment. One like we had at the special needs dentist - where the overall experience is set up for somebody with Declan's needs and it therefore gives the best results for the consultant. In reality, I remain staggered beyond belief that medical professionals still appear to have had no training in how to treat autistic children. And when those autistic children can't talk, it makes it all the more worrying as a parent, that vital things are being overlooked because a meltdown gets in the way of the examination. In the meantime, I will continue to look for ways to make the whole experience less stressful for Declan (and me!).