My journey as a parent to a neurodiverse child.
Updated: Jun 8, 2022
First and foremost let's just acknowledge straight away that parenting of any kind is hard. Children really don't come with a manual and what works with one, may not work with another.
Challenges come when you least expect them, some can be remedied quickly, others can take weeks, months or even years.
My son is an only child and when it came to him being different from other children, I didn't realise until he started playgroup. He had no interest in the other children and would rather talk to the adults. Up until that point my son had been slow to walk, had reflux, had loads of energy and once he started talking, he did so with full sentences and honestly never stopped talking once he started. His natural curiosity meant there were lots of questions asked and answers given. He was reading books from a very early age and my main concern was that he would find school boring as he was ahead of his peers.
Once he started school my concerns grew. His teacher in Primary 1 mentioned the hand flapping, once. I asked was it something to be concerned about and she simply said that we needed to keep an eye on it. In Primary 2 at a parents evening the headmaster commented about having to create an IEP for him and I went straight after him and asked what he meant. Nothing really, just a joke.
I remember being on work experience in another area of the school and could see him in the playground at break times; mostly on his own, stimming and flapping in his own excited way. It was very rare I saw another child near him. I knew he wasn't miserable as he enjoyed school and stimming has always been a happy thing for him but I also knew that something was going on.
Part of me thought about autism but then again my son didn't quite fit into it. He talked to anyone and everyone, he made eye contact, he loved talking to people and being the centre of attention. He was very adult like but then again the only company he had was adults. We didn't live near any children so there was no one for him to play with, his cousins were all a good bit older or lived across the water. Yes he was fussy eater but so am I and I thought he was copying me. My knowledge of autism wasn't great. At that point I had yet to come across a child like my son, he had some traits but not all.
Purely by chance I then read about Gary McKinnon (the young man with Aspergers who was accused of hacking into 97 US military and NASA computers back in 2002). A newspaper had spoken to his mum and as I was reading the article, I immediately identified with how she described Gary. She could have been talking about my son.
Armed with this information and wearing my work uniform for effect (I worked in childcare), I marched into my GP's surgery and demanded that he be referred for an assessment. My GP didn't argue and did as I asked.
It was around this time that I started to link in with other parents of children who were suspected as being autistic or that had a diagnosis. The first meeting I ever went to scared the life out of me, hearing them talk about their older children, the struggles with mental health and how some of them could no longer live at home due to their mental health and behaviours.
I came home and cried wondering what lay ahead for my son and for us as parents.
The wait between referral and assessment at that time was relatively short. We were one of the lucky ones. He was diagnosed aged 8 with Aspergers. Six months later came the ADHD and a further 6 months later with PDA. At that point he was only 1 of 6 children in the whole of Northern Ireland with a PDA diagnosis.
Once armed with his initial diagnosis I approached his school and asked about a statement and was told he was on the list. I then found out that for the most part only 1-2 children go through the educational psychologist each year and all I could think of was that he won't get an assessment this year and possibly the year after that.
At this point I had built up friendships with other parents in the same boat as me. Most had more knowledge of the education system than I did and I was advised to start the statementing process myself. At that point I read everything I could about getting the right plans in place for a child with PDA. No one had heard of it asides from the professionals that diagnosed it. The school had never heard of it, I had never heard of it. I put what I thought was needed on the statement going by what I had found out, not really knowing if it was enough, too much or even the right thing to ask for.
I applied and was turned down but with the support of a law centre in Belfast I was advised to appeal. This appeal went right to the court date and the Education Board finally agreed just before the proceedings were to start. Apparently that was common back then.
The hard part was educating others on PDA. His dad, extended family, the school. Yes there were already existing strategies in place for ASD and ADHD that they could use but there was nothing on PDA. I remember reading that students with PDA needed a classroom assistant for at least half of their time in school. I knew that I had to make sure that at the very least I got him a classroom assistant.
Another mum told me that if they agree to an assistant then make sure the assistant's hours is written on the statement. If they give an assistant and the hours isn't on the statement it just means they have another person in school they can send round the classrooms and does not guarantee they are with your child. I was ever so grateful for that advice. When the first draft statement came in it was the first thing I looked for. Of course it wasn't on it, so I sent it back making the necessary changes. The next one I got included it and all the changes I had requested so we went with it.
Over the years it has been reviewed with the SENCO in secondary school. We never made any changes to what was on it. We knew that while he may have been managing better with certain things, the provision would always be there. Simply because you never know when a particular need may arise again.
I know that the education system is a bit of a minefield. Some schools are fantastic, others (going by my discussions with other parents) leave a lot to be desired.
I remember going to see my GP and she asked how my son was getting on. She advised me that a grammar school may not be a good idea given what she knew about him. She had been seeing fourth, fifth and six year students (Year 11,12,13 and 14) who were all in tears, depressed, stressed out, anxious, unable to cope with the pressure the school placed on them with homework and getting good grades. These pupils didn't have additional needs. The message from this being that you really should take time to consider if your child can cope with this kind of pressure. I already knew that my son found it really difficult to do homework out of school and that his grades depended on how much he like the teacher and the subject matter.
Back in 2011, when my son was transitioning, another professional also informed me that up until a year or so before this, grammar schools did not have to take pupils with additional needs and many didn't. This changed and they were required to take a certain amount of pupils with additional needs and, in turn, that meant that their support system and teachers weren't as experienced, compared to your local comprehensive who had been admitting pupils with additional needs for many years.
My son chose to sit both sets of tranfer tests and did well. We applied to a grammar school that many in his class were going to, as this was his wish. They came back and said they couldn't facilitate his learning as they couldn't meet his needs. I remember being cross at the time. I had been advised that I could have them for discrimination but in the end I thought why send him to a school that doesn't particularly want him and may end up failing him.
I'm sure this has changed since then but I really would advise having a very sincere talk with any potential school. Attend the school open day and also ask for an individual meeting. Explain any difficulties your child may have in school, things that you also know they struggle with and ask them do they think they have the capacity and time to work with your child. Ask them to be upfront and realistic. Wouldn't you rather hear that beforehand than struggle with it while your child is there?
The hard part is being prepared to fight for your child. You do get weary, you do wonder if the problem is you or your child and if you expect too much. You may be blamed for your child's behaviour or inability to work. This does not mean that it is down to you, but it can be easier to blame you than admit the system operating around your child in school isn't the best.
The best advice I can give you is to try and work with the school and especially the teachers and assistants. Give praise where they do things well, even the simplest of things. As teachers they do not always get it right. They may feel like they are failing but do not want to admit it!! A little bit of praise goes a long way and helps build the working relationship between you and that, in turn, helps your child. Even if you don't like the teacher or the classroom assistant, it can go a long way.
Don't be afraid to make suggestions based around what works for you at home. If noise is an issue, tell them. Think about the things that trigger meltdowns that you know because the situation could be similar in school. if you improve the lines of communication, you my also find there are different triggers in school that you weren't aware of.
Write lists of points you want to raise and take it with you. I don't know how many times I came out of a meeting and forgot something that I needed to say. Sometimes we can get caught up in the heat of the moment.
If you find that you are getting stuck going round in circles, ask to move on and say you can come back to it later if it isn't urgent. Schedule another meeting. It gives the school and you time to think of other options.
They may come to you out of utter frustration insisting that you do something about the way your child behaves in school. Feel free to remind them that asides from going in and sitting beside them, there isn't anything you can do in school as you aren't there. You can talk to your child about how they are behaving but you have no control over what happens in the classroom, that is down to them. Ask about what the behaviour is, share your thoughts on what they tell you. Ask them if they have noticed any triggers, if they haven't maybe it is time they started to look.
Don't be afraid to use you voice. If your child is upset by something, listen to them and then share with the professionals but there is a way to do it that may give you more control.
An example of this is when my son came home complaining about a classroom assistant and a teacher. I spoke to the SENCO and pointed out how their words affected my son. I did it in a careful manner. I told them that he heard a conversation between them both said purposefully in front of the whole class. I informed her that my son felt hurt, ashamed, embarrassed, ridiculed and angry.
I didn't tell the SENCO about the details of the conversation until after I explained how my son felt. When she asked why then I explained. He was in the other P4 class as he wasn't going swimming and was given a book to read. When he finished the book he sat and looked out the window. When the assistant asked him had he read his book he replied yes but she didn't believe him. She then shared her thoughts with the teacher in front of the whole class, saying it was typical of him to lie and say that because he didn't actually want to read it. The teacher agreed with her, in front of the whole class.
It was a different way of doing things and it meant I had more control of the conversation. I knew if I went in all guns blazing and pointing fingers, there was less chance of being heard and backs would be up before I had the chance to explain the effect on my son. The SENCO then asked me what I wanted to happen. I wanted them to be made aware of it but I would rather it came from the SENCO. I wasn't interested in hearing their excuses as to why or how they thought it was ok to speak to him or about him in that manner.
In making them aware of how they behaved and the effect it had, it changed how they spoke about him in front of others. If they did have conversations about him, they certainly didn't do it in front of him or he would have told me.
I also got the opportunity to tell her that my son thought that his classroom assistant wasn't a very nice person. I questioned was she the right person to have as his classroom assistant given that he didn't like her and from what he told me, the feeling may well have been mutual. The next term he had a different one and I'm not sure how they worked that out and to be honest I really didn't care. My son preferred her replacement.
A great classroom assistant is worth their weight in gold. My son still talks to his and he has been out of school for a year. He thinks very highly of her even if there were times when they kinda fell out because of the school work itself, he knew that she was looking out for him and wanted the best for him.
What I really want to express is this ....you are your child's biggest advocate, especially on those days where we could see it far enough. I know it's tiring but if you don't start the ball rolling by talking to the teacher or school or enlisting the help of another to speak on your behalf, who will?