Fumbling through the fallout – coping with my son’s autism diagnosis

Originally featured on Meet Other Mums

I’ve debated posting this for a while now and have written different drafts and then deleted them. The following post is the lead up to and how I coped after J’s autism diagnosis. It’s all about my own thoughts and feelings, the effect on our lives and our family.

J had a difficult birth and a rollercoaster of a week afterwards, followed by many follow up visits and appointments with a long list of health professionals. In the beginning, right after his birth and in the days that followed, my fear was that he wasn’t going to survive. He didn’t feed, had a ‘floppy incident’ and ended up in intensive care hooked up to a variety of machines. Once this crisis passed and we were able to take him home, we worried about his colour, as he was very purple and I had to set an alarm through the night to waken him up and feed him. 

We got through this and then the follow-up appointments with the paediatrician. It seemed like each time was a little more pointless and I still didn’t know what to expect or what/if anything would be wrong going forward. Once J was one I was a little more adamant at his visits. He hadn’t reached certain milestones, crawling, sitting up, etc within roughly recognised time frames. At this point he was referred for follow up in the community with a paediatrician, physio and occupational therapist. The physio gave exercises to try to strengthen his core and help with his hand grip and movements. The paediatrician scheduled appointments for us to talk and get not very far and the OT took a little while to see him due to his age. 

After several months the physio said that the way he used his hands was how he has adapted his movements to carry out tasks and there wasn’t much more she could do. She discharged him but said we could re-refer in future if we wished. The OT completed sensory questionnaires and tried different turn taking and sensory activities with him. The consultant arranged a birth to three multi-agency meeting, which didn’t have a major result other than to refer him for further assessment. All very frustrating and a long road to travel for all of us.

Out Health Visitor was great, she arranged a pre-three nursery placement application to support J’s development and attended the initial meetings to fight his corner. There were so many meetings to attend and reports to read! Eventually he was referred to a specialist team to determine whether he was on the autistic spectrum. The waiting list was long but eventually when he was 3 years and 2 months old my mum and I took him for his assessment. 

I remember every part of that day (and those who know me know my memory is not all that great!) I got away from work to go with him and we struggled to find the place the assessment was taking place. For some reason the map showed the street ending at a garage and after driving around several unknown streets, I had to call for directions. It was a white building and we had to park on the opposite side of the road. The boy on the desk was helpful, he had difficulty with eye contact and I later found out that the centre employ people on the autism spectrum to give them experience in the workplace. 

Once there went in to a room with a sofa and small pool table. There was a small adjoining room which had some lights and toys inside. J was allowed to explore and play between the two rooms while two speech and language therapists observed him and chatted to us. After this one of the therapists took my mum and I to another room for a more formal chat and J, reluctantly at first, stayed with the other therapist to play. We were asked many questions and the therapist referred to reports submitted from others involved in J’s care and education. Some of the things they had written were news to us. I was a little upset at this, as I think professionals should be up front in telling parents their findings. 

At the end of it all we were told that yes J had autism. He had a wider developmental delay but part of his delay was related to autism, though it was not the sole cause of his developmental difficulties. We were given some leaflets about two charities who work with children and parents and told that the full report would be with us in a couple of weeks time. And that was it really. Out into the big bad world to go back to our lives and just get on with it. All that build up and the long road to get here and within a couple of hours it was over and we were back outside the building and on our way home.

I think initially it didn’t really seem like it had happened at all. The build up and expectation was so much more than the diagnosis itself. I didn’t think I would be all that bothered about it, as it had been what I expected to hear anyway. This wasn’t the case though. The confirmation came like a big hard punch in the gut. I think it was made worse by the fact I hadn’t been prepared to feel that way about it. I cried, a lot, at times after that day. My mind seemed to now wander to the childhood and future J may miss out on, the limitations for him and the hardships he may face. It was all so uncertain, no one really knew what the impact would be for him. In fact, we still don’t really know.

Initially nothing changed; work went on, life went on and we just got on with it. I think because we thought we were prepared for what we were going to be told, we hadn’t actually prepared for what would come afterwards. I hadn’t prepared for the thoughts that became more concrete and real after hearing the words. I went on through the next days and weeks almost in a state of numbness. Still as though it wasn’t really real. Once the initial shock settled a little my thoughts moved from what J would miss out on to what we could do to help him as much as possible, to support his development. I had thought that a diagnosis would have helped in a way, that there would be more support. I couldn’t really have been more wrong.

The first people the diagnosis helped were the staff in his mainstream nursery. It gave them further ammunition to say it wasn’t a suitable place for him. They had been determined that this was the case before he even set foot in the door and before they had met him. They were always keen to point out the things he couldn’t do and the difficulties he had. None of the discussions ever seemed to involve how they could accommodate his needs or try to help him. It was made very clear that he wasn’t wanted there before he even set foot in the door and each meeting just added to this. As a person who had sat on both sides of the table in these types of meetings, I wasn’t prepared for the side I was on. I hadn’t expected their input to be so negative, for them to be so unwilling to do for my son what I have gone out of my way to do for other people’s children. He was already at mainstream nursery when we received his diagnosis. It just seemed to make them all the more determined to push him back out the door.

As part of their wish to show me how unable he was to cope, I was invited to go into the nursery to observe him. I took them up on the offer and hid in the kitchen to watch so that he couldn’t see me. Initially he joined in with group time, walking round the group to count people and joining in with the song. After this he sat for a short time before going with his assistant to a separate area where she brought out a bag of ‘activities’. I have to say I was disappointed by what I saw and it really confirmed for me how little they knew about him. It showed me that because he was non-verbal they just assumed he had absolutely no ability to understand them or to comprehend activities. The bag was full of toys a baby would use; stacking rings, a bead run, toys with sounds and flashing lights and other toys that were things he had been able to use at an early age. None of them were designed to aid his development or progress in any way. They were all there to keep him quiet/entertained and out of their way. The visit really opened my eyes to how little they were doing to try to accommodate his needs, how little they knew about him and really how little they cared about his progress. For them it was simply a matter of waiting it out until they could get me to give in and move him elsewhere. To say I was heartbroken by this doesn’t go far enough. I was devastated by how little they wanted to try, by how hard they were trying to get rid of my boy. To make matters worse they kept insisting that they ‘only want what’s best for J and what’s in his best interests.’ Did this mean they thought I didn’t know or want this for my son? For a while I questioned myself on this. Was I doing what was best for him, were they right, was it me who didn’t know him well? They made me doubt myself and my ability to make decisions about my son and his development/education. Looking back now I still believe they were wrong. 

After his first year there I decided to move him to a Language and Communication Support Nursery. Not because I felt it was his best option but because I knew where he was wasn’t working out. I have to say I place responsibility for this at the feet of the head teacher at that time and his key worker. Had they been more willing to try, I am certain it would have been more of a success. I always knew J would not cope with attending a mainstream primary but nursery is an entirely different setting and he had a one-to-one ASN worker with him. His placement failed because of an unwillingness to support his needs and perhaps a fear of the unknown on the part of the staff. I didn’t move my son because I thought they were right or because I thought he couldn’t cope. I moved him because they couldn’t cope and he was missing out as a result. 
His new nursery was wonderful. They were so welcoming. It was a smaller setting with less children, which was a bonus. They had a genuine warmth and each time I visited I could feel that they were invested in J and his needs, his progress. The language they used was so much more positive and almost immediately I could see that they made an effort to get to know him. When I went to the first progress meeting for his support plan, the first parents evening, the open day, right through to his graduation; everyone was so welcoming and positive. They knew my son and his needs. They had a genuine warmth when they spoke about him and they celebrated all of the things he can do (and there are many!) 

The next fight came when it was time for him to go to school. We asked for him to attend the school where his nursery was. It doesn’t happen automatically as they work separately. The letter arrived with his placement and it was for a school 16 miles away. At 4 years old they wanted my son to make a 32 mile round trip to school each day! We appealed and heard nothing, then we heard the same answer and we fought again. Eventually after lots of back and forth, sleepless night so, letters, phone calls, etc. he was allowed a place in the school we wished. It was certainly worth the fight. It’s such a wonderful school. I genuinely feel uplifted each time I visit. Communication with and involvement of parents is great. The staff seem to genuinely care about the children and set high expectations for them. They challenge them and go to great lengths to give them such a variety of learning experiences. Success is celebrated and I can tell that J is settled and happy where he is. He even managed to tolerate a bit of the Hallowe’en disco this year!

I suppose in a round about way what I’m trying to say is that I thought the diagnosis would be the end of the fight, the beginning of help and support being offered. This was not the case. If anything, it was the start of a bigger, longer, harder fight that continues today. Nothing J has had was offered up or easy to find out about. It involved a lot of research, asking loads of people, contacting many different departments and agencies, writing countless letters and emails and basically badgering anyone I was able to get in contact with. 

I like to think that I’ve come to terms with the diagnosis and all of the things that have gone on in his life so far. Truth be told each part has left its mark. I’m not the same person I was at the start of this journey and I’m unlikely to be the same person at the end as I am even now. However, as long as the person I am gets my child what he needs and ensures he has the best chances and opportunities I can get for him, then I’m willing to be ok with that.

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