The answer is Hard!
I haven’t posted anything for a bit because time has been rather taken over with various exciting family challenges and decisions over the last few days.
The particular focus of this post is on the issue of the week, which has been the challenge of contact lenses. B decided several months ago that he wanted to try contact lenses instead of his glasses. Initially I was very sceptical about the wisdom of this. I have worn contact lenses since I was a teenager and love them. I would never go back to wearing glasses. I did think that, eventually B would want them and would benefit, but I wasn’t convinced that he was ready to deal with the challenges of getting used to them, putting them in and taking them out and dealing with the cleaning routines etc.
After a few months of constant nagging from B and support from D I gave in and took B to the hospital. The first attempt with soft lenses was pretty much a disaster and, I’m ashamed to say, there were a few ‘I told you so’ feelings going through my mind. However as I watched him struggling with the soft lenses I began to think. There was no way I could help him with the soft lenses. I couldn’t see them and they were so soft and floppy I couldn’t really feel them either. B was really struggling to get them in and take them out. One of the aspects of aspergers can often be a tendancy towards dispraxia, which is a difficulty with spacial awareness amongst other things, and can mean that some physical activities, particularly fine motor skills, can be a bit hard. We have never had a diagnosis of dispraxia, there didn’t really seem to be any point in doing this. We just have to deal with things as they are and find the best way to do things and to support B.
Having said all this, I realised that if contact lenses were going to work it would probably be better to try with hard lenses as at least B would be able to feel them, they are less likely to fall off a finger and couldn’t get turned inside out. The other advantage was that I am familiar with hard lenses and would be able to offer much more practical support as well as being able to share my own experiences.
B was getting more and more frustrated, he declared that he didn’t want contact lenses any more. It was all too hard. Often B can get very enthusiastic about an idea, but the reality and practicalities are a different issue and he struggles to deal with the practical challenges. It often seems to me, that he very easily gives up when something is initialy quite hard. The challenge for us, as parents, and the people around him, is to find the best way of supporting him to deal with challenges of new situations and practical tasks. So, we went home from that hospital appointment feeling a bit down and defeated.
Although I had my own reservations, I was keen for B not to see it as a failiure. I reminded him that he wanted to do it, that it had been his choice, and that I had explained that, in the beginning it is hard, but that I had found the initial difficulties worth it in the long run. I expained that this was his first go and that it was worth trying again. I also explained that there were other options apart from the soft lenses he had tried. On the second hospital appointment we had another go with the soft lenses, but with little more success, so I spoke to the optometrist about trying with hard lenses. After talking it over she agreed to give it a try. She said this is a better option in the long run, but most children find them difficult to get used to which is why she always opts for soft lenses with children.
Not wanting B to go away a second time feeling defeated, the optometrist found some hard lenses for him to try. B seemed to tolerate them quite well and when it came to the lesson in taking them out and putting them in he did it stright away and had three successful attempts. This was a huge boost as he realised that he could do it and renewed his enthusiasm to continue with the goal of contact lens wearing.
Another month went by before the next trip to the hospital to pick up the lenses made to B’s perscription. This visit was a mixed affair. He felt good with the lenses in, but the taking them out / putting them in lesson didn’t quite go so well, he managed successfuly several times with one eye, but couldn’t get the other one in at all. Usually the hospital policy would be not to let us take the lenses home until the person is able to put them in and take them out confidently. I felt that it would be a real knock to B’s confidence if we weren’t able to take them home. The anxieties of trying to perform a new task in an unfamilar setting, with people watching and with a clear sense of pressing time, is not the most relaxing way for anyone to attempt a new task, never mind a young person with Aspergers. After discussions with the hospital staff, they agreed that as B had previously been successful taking the lenses out and as I knew what I was doing they would let us take them home so that he could try in his own time.
As we travelled home B, again felt really unsure about his progress. He was beginning to waver again and was ready to give up, saying he couldn’t do it.
As, I have mentioned, I had my own reservations about the wisdom of the decision to go for contact lenses, but it was B’s decision and, I think it is really important to recognise that everyone has the right to make their own decisions and, as parents, we have to decide when our children and young people are able to take decisions and which should be supported, even if we’re not quite sure of the wisdom of that choice. Having reached the stage of getting home with contact lenses and a child who was ready to give it up as being too hard I had to make a choice. Do I encourage him to deal with the difficulties and remind him of his choice? or do I sit back and say ‘Well it’s your choice, so if you don’t want to try then that’s fine? The reality is I had to do a bit of both.
When we arrived at home that night B wanted to try putting the lenses in to show his Dad. Given the consequences of that decision, I am still unsure as to whether or not it was sensible! What ensued was an evening of misery for all of us, particularly for B.
He did get one lens in after a few tries, but must have got an eyelash caught. As his eye was stinging he tried to take the lens out, but didn’t quite manage it. The lens came off the front of his eye, but moved to the side instead of comming right out. For those of you who wear hard contact lenses you will appreciate how irritating this is, and how scary it can be at the beginning of a contact lens wearing career. At this point everything in our house ground to a halt. B was panicking. He was uncomfortable, crying, he didn’t want the lenses any more, he didn’t want to touch his eye to try and move the lens, he didn’t want me to do it, he didn’t trust me etc.etc. As he was getting more and more upset I have to admit that privately I was wondering what I could do.
Outwardly I remained calm, explaining that if he let me I would be able to move the lens. I told him that I knew it hurt, I had been there. I also explained that this was the first night, and that whatever happened in the future it was unlikely to be as bad as this (in terms of contact lenses). Eventually, after 3 hours of crying, worrying, resting, negotiating etc. He let me take the lens out. Luckily I managed to do this straight away once I was allowed to try!
That night a very upset B went to bed swearing that contact lenses were not for him and he never wanted to try them again. This left me wondering what to do. On the one hand the events of that evening had summed up all the initial worries that I had about the decision to try contact lenses. I hadn’t been entirely confident that I would be able to help if he couldn’t get them out, but the experience of that night changed my mind for two reasons:
1. That was probably as hard as it gets and I had been able to help him. And more importantly, B had understood that I could help him.
2. I didn’t want B to have such a negative association with contact lenses. If we left it like that he would always have negative memories and associations and would never want to give it a go again.
Having resolved that the way forward was to support him to continue the next issue was How? I knew that, in order to get him to try again I would have to give him a lot of positive encouragement, and may be a fair bit of nagging! but I didn’t want to push it so much to put him off. At the end of the day it was his decision we wanted to support. It wasn’t something he had to do.
We left it a couple of days and just talked about the reasons he had wanted to try and about the experience of the first night. Eventually he agreed to give it another go. On the first evening he couldn’t put the lenses in, he had lost all confidence so we just gave gentle encouragement, again reminding him that it was his choice and that he had wanted to do it and that everything is hard at the beginning. After a couple of days he managed to put both lenses in, wear them for an hour and take them out again.
The breakthrough was made! Since that day, for over a week now, B has been putting the lenses in, wearing them for a bit longer each day, and taking them out succesfully.
This has been a really positive learning experience for all of us. It is a great achievemnet for B to get the lenses he has wanted for a few months and he has experienced another example of how, if you keep trying at something that initially seems difficult, that you can eventually succeed. I have learnt that, sometimes I have to have more belief in myself as a parent and in Bs abilities to persevere.
Whatever happens now with the lenses, if we experience another difficult day, which I’m sure we will. I hope that we will all have more trust and confidence to deal with it better and that B will have all the good experiences to think about as well as the difficulties.
So, ‘Hard’ it is, in every sense of the word, but definitely worth it!
Thanks for reading