Advocating for your child

When Damian (my youngest child) was two years old, I decided to enrol both my sons into swimming lessons. In Australia, where we have many beaches and hot summers, many pastimes revolve around water so swimming lessons are a common extracurricular activity and safety consideration.

Damian was initially terrified of swimming pools. Even after he had watched his older brother enjoying his swimming lessons for several weeks as preparation, just putting his toe in the water made him shake like a leaf. After a few weeks of encouragement, praise and playing games that he liked in the water, with people he loved and trusted (my husband and me); he was ready for swimming lessons.

In baby classes, you might notice that some swim teachers’ freely pour water over babies’ heads. The babies can’t talk so they cannot say stop. In this particular class they would blow air in their faces first as a consistent warning that they were about to be dunked. However, Damian was very verbal for his age and repeatedly pleaded in desperation “Please don’t put my head underwater, I don’t want to put my head underwater” so the swim instructors didn’t have the heart to put his head under the water.

To encourage Damian’s confidence in the water I would get into the pool with the boys after their lesson, I would play ‘pool chasey’ with them, ‘splash fights’ with them (they did most of the splashing), throw them into the air and make sure they had as much fun as possible to increase their motivation and confidence in the water to encourage them to come back the next week. They looked forward to playing with me after lessons.

I was one of the few parents who got into the pool with their children and the only mum I saw that played so enthusiastically with them whilst in there (although, I am sure there are others out there). I felt a slight tinge of embarrassment because I looked like a drowned rat and behaved like a child but I was doing it for my boys and in the end that mattered more. A couple of times other people’s children would hang around as if they wanted to join in and that is when I encouraged my boys to play with them, with less direct play input from me.

When Damian was almost three years of age they put him into the next class up, which required him to go in the water without me. There were four kids to a class and they did age-appropriate water activities. Half their lesson was spent on a platform at the deeper end of the pool. I remember he was scared of going between the platform and the edge of the pool because he couldn’t touch his feet on the bottom of the pool. However, within a few months he had grown tall enough to touch the bottom and he was pretty thrilled with that.

Strike One

Damian still hated putting his head underwater but his new instructor would dunk him under from time to time. I could see that he was upset by it and it was affecting his whole mood for the lesson. Damian had stopped verbalising that he didn’t want his head under the water (regression in communication is not uncommon with infants/toddlers with autism) and would express himself through a low-level grizzle throughout the duration of the class some days and occasionally he would refuse to join in when he was too upset. His instructor’s method for dealing with his grizzles and non-compliance was ignoring it.

Damian started trying to refuse to go to lessons and he was having nightmares about putting his head under water. It was clear I was going to have to intervene on his behalf. I wrote a letter to the swim school supervisor, which I have copied word for word (with names blanked for privacy) as follows:

Dear _____,

My sons Jeremy and Damian _____ attend swimming lessons at _____ Swimming with your team and I am very happy with _____ Swimming. Jeremy is thriving at your swim school, he loves to swim. Damian, however is having nightmares about water, constantly talks about not wanting his head under the water and does not like attending swimming lessons. As I have mentioned previously, Damian has Asperger’s Syndrome (an Autism Spectrum Disorder). Although, all children are different, Damian is more different because of his disability. This is the reason I am writing to you today.

Although, Damian has a very good vocabulary for his age and looks no different to other children, there are a couple of stand- out features that affect his experience with swimming. Damian has an intense fear /dislike of putting his head under the water. This dislike could be sensory (children with Autism often have sensory processing difficulties) and/ or psychological fear (Damian has a lot of fears and anxieties, more so than the average child). Damian also has difficulties with communication (all children with Autism have difficulties with communication, it is one of the triad of impairments constitutes the diagnosis of Autism). Because Damian has difficulties with communication he is unable to show people in the usual ways (verbally and body language) of his fear of putting his head under the water. Damian often has a blank expression on his face (doesn’t show the feelings on his face) and communicates his discomfort/ pain/ fear by general grizzling regardless of the intensity of that discomfort. It is possible that Damian tolerates putting his face in the water at some times and not others and this is likely to be completely different to putting his head under the water completely.

What I ask of _____ Swimming is that Damian’s swim instructor (_____) does not put his head under the water at anytime without first asking him specifically and obtaining his consent. I am happy for Damian to never have his head completely submerged in water. Damian needs to be asked on each occasion if the swim instructor wants to put his head under the water and not just one time for the lesson because like most children on the Autism Spectrum, Damian does not like surprises (to the extent that it makes him highly anxious, which may only be clear to those who know him very well). Putting his head under water, when he is not expecting it, would be a doubly disconcerting surprise.

My goal for Damian at swimming lessons is to be able to save himself should he ever fall into the water as a child (or adult), I do not expect stroke development or anything which requires Damian to submerge his head completely underwater. The reason I have chosen to write this letter, is because I am also on the Autism Spectrum and find it difficult to communicate my needs as Damian’s mother (especially in noisy and busy environments).

I would like to reiterate that I am very happy with _____ Swimming and all the swimming instructors including Damian’s instructor, _____. However, should _____ have any difficulty accommodating my request personally, I am happy to change instructors.

Can you please let me know if my request can be accommodated?

Thankyou for your time

Rachel _____

The swim school supervisor told me that they appreciated the letter and said to me that they had organized a staff meeting to discuss the matter and that they would take my advice. I delighted in reassuring Damian that I had both spoken to and written to the staff and that they had agreed that they would not put his head under the water anymore unless he said they could. Damian was pleased too and all the nightmares and lesson refusals stopped.

After some weeks, Damian surprised us all by putting his face in the water by himself while he thought no-one was watching and slowly built on this. In addition, Damian started saying that he wanted to be a swim teacher when he grew up.

After a couple of months, I did actually change swim teachers for Damian. I made an excuse that I needed to change the lesson time when the real reason was that I was not convinced that she was a good fit for him. It wasn’t her fault so that is why I didn’t give the real reason. There were still moments of discomfort and difficulty for Damian and the swim teacher’s way of dealing with children who were upset was to ignore the problem, which may be effective for some children but not with Damian. In addition, she never smiled and didn’t seem to be having fun, which I thought was important for Damian to keep his interest.

The swimming lesson pool was quite large compared to other pools in the area and there were several other pools for laps, therapy and water aerobics nearby. At any time there were about seven swim classes operating next to each other and children swimming in the free play area next to the classes. It was very loud due to the noises of children yelling, music playing (for the aerobics classes) and water splashing. The echo in the large auditorium in which the pools were situated was almost deafening (especially to those of us with sensitive hearing such as Damian and I).

When Damian was not involved directly in an activity (they took turns) he appeared oblivious to what was going on around him and entertained himself by jumping off the platform and back on again. The way Damian jumped up and down off the platform resembled one of those repetitive calming activities that some people with Autism often do that is called stimming.

I did a quick wordpress search to find an explanation for stimming for those readers who may not be familiar with it. I thought that this post by ‘Ask An Aspergirl’ explained it best (click here). Jumping up and down in the water is likely to have been Damian’s way of copying with the chaos around him. He certainly wasn’t doing it to be intentionally ‘naughty’ or to draw attention to himself.

More often than not, it was difficult to get Damian’s attention (most likely due to the noise), and his new swim instructor found it difficult enforcing the rule of staying on the platform. His new swim instructor probably decided it was a battle she didn’t want to take on at that stage, as they were making great progress in some areas with him particularly with back floating.

Damian’s swim instructor had been doing a great job giving him lots of verbal praise and high-fives and Damian was gaining confidence in the pool. Given Damian’s positive response to praise, she started to take it one step further by giving him rewards of certificates and fridge magnets. Unfortunately, the swim school supervisor did not appreciate her efforts.

Strike two

The swim school supervisor watched Damian in the pool one day after being told that the swim instructor wanted to give him a certificate for back floating (an activity he was previously afraid of). He stood there for quite some time watching Damian jumping on and off the platform. After the lesson he proceeded to express his disapproval to me in front of Damian and reprimanded Damian about how he should not be jumping on and off the platform.

The swim school supervisor also said that he wasn’t comfortable giving Damian a certificate because it was “rewarding bad behaviour” but begrudgingly handed it over when I reached for it. Damian had been promised the certificate and was looking forward to receiving it and I thought he deserved it for being so brave to conquer his fear of back floating; I wasn’t going to let the swim school supervisor retract it.

However, it was too little too late. Damian’s facial expression went from excitement knowing that he was going to get a certificate to a complete lack of expression and he stared into the distance away from us for a long time. I can only imagine that Damian was stunned and confused and didn’t know how to process what was being said to him. The supervisor even noticed Damian’s reaction as being strange and asked if he was OK.

I am annoyed that I didn’t advocate fully for Damian then, instead I apologized about Damian’s behaviour on the platform and said I would talk to Damian about it later (and I did). However, later when I started to consider the unfairness of the situation I started to feel upset about it. The swim school supervisor should not have said all that he did in front of Damian; he could have called me to discuss it. He also clearly had no idea how to support a child with autism (refer to my post on communication and behaviour). I chose not to complain about it hoping it was just a once off event.

Not long after that, Damian graduated to the next level of swim class, which did not involve activities on a platform. A new set of expectations were placed on him. There were fewer games and more stroke improvement drills with the teacher standing several metres away from them shouting instructions. Damian started losing interest in swimming and I started offering tokens (refer here for further information about Token Reward Systems) for just participating in the swim lesson as an extra incentive for continuing the swim lessons.

Strike three and you’re out

Damian often couldn’t hear when the swim instructor called out his name from a distance because he was distracted by all the other noises around him. The teacher had stopped giving him rewards (most likely under instructions from the swim school supervisor) and had reduced the amount of praise significantly so the only feedback Damian was getting from her was “Damian you are not listening! You need to listen!”

Eventually Damian burst out crying saying “I can’t do it!” and had a full meltdown. I took him out of the pool and cuddled him for about 20 minutes until he calmed down. He clung to me all that time, sobbing loudly.

I immediately began to search for a different swim school for Damian. I left a message for the swim instructor to call me back to attempt to talk to them about it but it was the receptionist that called me back. I actually felt that they would have been glad to ‘get rid of’ us by then so I told the receptionist not to worry about it because I would sort the problem out myself. I cancelled the swim lessons and booked in somewhere new.

It was the best decision I ever made. Damian is loving his new swim school, which is much more kid-friendly and he has full confidence in his abilities. I wish I had changed swim schools earlier to avoid those bad experiences for Damian. However every experience is a learning experience and advocating is not a perfect process (there is no perfect).

Damian was aware of the steps that I took in that process. He knew I wrote a letter for him, he knew I explained the problem and offered solutions that I gave the swim school a chance and he knew I looked for the best swim school for him when they failed to support him adequately.

My children are going into life having already being aware of the concept of advocating for their needs and the needs of others, trying different things to solve problems, the failures and successes; perhaps that’s not such a bad thing.