A Christmas That’s Suited To Everyone’s Needs?

Christmas can be a difficult time for people with autism and additional needs. The noises, lights, routine changes and so many other things can be overwhelming. When J was younger we hadn’t really thought much about these things. We hadn’t been prepared for it. I think we just assumed he would be excited and would love it in the way my nephews and niece had. Maybe this visit to Santa should have forewarned us. Not much has changed in this respect, he still gets upset at the thought of meeting Santa.

The year we found out things would be different for him was when he was 3. We set all of his presents out, nicely wrapped, and in the morning we went downstairs for him to open them. It was hard to tell if he was excited. We just assumed he didn’t really know what Christmas was yet and, as he was our eldest, he would pick it up as time went on. He happily opened the first present and wanted to play with what was inside. After doing this another couple of times he just wanted to sit down and play with what he had and didn’t want to open anything else. He became a bit overwhelmed with every individual item needing to be unwrapped and eventually had what we now know as a meltdown. He started flapping his fingers and shaking his head, whining and whimpering and becoming very distressed.  Continue reading

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Feeling helpless with all of the sickness!

My poor boy has been not well again – for the fourth time in three weeks. He was sent home from school around three weeks ago, after being sick whilst on an outdoor learning trip with his class. My mum picked him up and said he was struggling to walk and to keep his eyes open. He was extremely lethargic for the rest of the day and had little energy for several days afterwards. He got over this and went back to school just to be off again a week later, after having been sick all weekend. 

This Monday I had to keep him off as he was sick on Saturday and I didn’t want to send him back too early. He seemed better on the Monday and slept all night too, so I sent him back to school yesterday. Last night he was violently sick again and had terrible diarrhoea. He’s exhausted and has definitely lost weight. He usually has a big appetite and loves to eat but recently he has been off his food. We don’t force him to eat, as it only ever results in him being sick later. We give him plenty of fluid and allow him to rest, give him paracetamol to keep his temperature down and lots of cuddles and TLC. How many six year olds need to go to a bed that has to look like this?

Because he is non-verbal it can be difficult to know how he’s feeling and he can’t tell us if he’s in any pain. I feel pretty helpless watching him being sick and wish I could just stop it from happening to him. It can be hard to know when he’s going to be sick and therefore there is often a lot of cleaning up to do. Last night he managed to cover the bed mats and still get the pillow, sheets, mattress and carpet. 

I took him to the doctor last Monday, something I often see little point in doing. I know kids get sick and you just need to wait it out. I’m worried this time though. It seems persistent and a bit relentless. He doesn’t seem to be getting a break, rolling from one sickness to another. His poor wee body is showing the signs of it and he’s been crying and whining a lot. I can’t imagine how frustrating and upsetting it must be if you can’t tell anyone how you are feeling.

Kids get sick from time to time and in winter it is certainly worse. My other two don’t get unwell as often as J though and when they do it never lasts as long, or hits them quite as hard. I’m not sure why this is the case. I feel really sorry for him too. Surely it’s more than enough to have to cope with not being able to describe things to people or join in a conversation. Surely it’s enough to be overwhelmed by people, places and situations. Surely it’s enough to find it difficult to understand others or to express emotions. Surely it’s enough to be unaware of when and how to use a toilet instead of requiring nappies. Surely it’s enough to have difficulty sleeping. Why on top of all of his and more besides, does he have to be so sick so often?

I have to admit, at times like this, I find it hard to see a positive or a lesson to take from what’s going on. It’s difficult to watch him feel this way and know how to make it better. In spite of it all he tries to smile, he gives cuddles and he tries to get on with it as much as he can. In a way maybe that’s what I’ve to take from this. I’ve to see how resilient and strong he is in spite of al that happens to him. He truly is an amazing person and I couldn’t love him any more or be any more proud of him. Get well soon my boy! 😢😷

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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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Confidence – nature or nurture?

This post first featured on Meet Other Mums on 21st October.

Recently my middle child, B, went to the birthday party of one of the little girls in his class. He got the invitation over a week before and had been really excited about it. So much so that he talked about it every day and kept asking when it was Saturday, so that he could go to the party. To let you understand B has only been to one other ‘proper’ birthday party before; when he was at nursery. The other parties he has been to have been for family members, so there are a few familiar faces and usually me and some other familiar adults. He loves to play, to have fun, to run around, to bounce on bouncy castles, to dance and he loves soft play. Most birthday parties should be a piece of cake then!(🎂😂) Not for B. He was so excited right up until we walked into the party room. He even wrote the card and posed outside the building for a photo. 

Once we walked into the room it was an entirely different story. He was wrapped round my leg, head bowed, cheeks red and voice low and mumbling. I could see tears about to well up in his eyes and the look of fear in there too. The strange thing was, many of the kids he knows from school. He could tell me many of their names and wave at them if they spoke to him, but he couldn’t just run off to play with them. It was like he was frozen to the spot. He has never been an overly confident or outgoing child. He took a while to settle in nursery and despite being excited about starting school, he cried going in each morning for a couple of weeks. 

I tried to encourage him to go forward and join in, took him over to the table where kids were colouring in masks, tried to engage him in conversation with some of the children I recognised he knew, tried to get him to play on the soft play cushions with the kids there, tried to get him to climb on board the mini wooden pirate ship; all in vain. He stayed wrapped round my leg or holding onto my arm and begged me not to leave him. Other than the friends of the mum hosting the party, no other parents had stayed. They had all dropped their kids off and gone for tea or some other lovely kind of respite! 

I thought maybe if I stayed for the beginning he would settle in and I could slip off, but every time I moved even slightly out of his eyeline he looked around for me in a panicked fashion! I ended up there for the duration. The other mums probably thought I was a bit crazy, since this was the first time I had met them and I was the only one who stayed. I didn’t have the heart to drop him in at the deep end though and I didn’t want it to put him off parties for life or for it to result in him crying the whole time and wasting the party for everyone else. 

Eventually he coloured in a mask and said hello to a couple of others. He stood next to some children playing on the soft play cushions and sat on the floor for instructions from the party leaders. He was reluctant to join in with musical bumps and when I finally encouraged him I was devastated that he was too shy and hesitated to sit down, meaning he was out on the first go! The tears fell then and I had to work hard to quieten him before his friends noticed. Strangely the kids who cried the most during the party were the boys. The girls all just seemed to get on with it! He looked anxious the whole time and certainly didn’t look like he was having a great time. However, in the car on the way home and for the rest of the evening, it was all he would talk about. He told me that he’d had a great time and it was the best party he’d ever been to!

Anyway, bit of a long way to get here but it made me wonder if this lack of confidence or shyness is in a child’s nature or does it come about through their experience of life? Is it a bit of both? Have I failed him in some way and made him feel this way? Have my oldest son J’s needs, and lack of ability to help him out in situations like this because of his autism, had an impact on B’s skills and how he copes? Is there a way I can help him to feel more confident and able to join in?  I was a shy child and I’m not an overly confident adult. Does he get it from me or have I somehow inadvertently shown him to behave this way?

Any ideas on how to help him through this anyone? Is it truly just his nature or is nurture responsible?

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The Pramshed

Life Unpredictable

One of the things I both love and hate about life with autism is that it can be so wildly unpredictable. From one day to the next or even one minute to the next, things can change dramatically. Our day can go from being happy, fun & exciting to being hectic, difficult and even traumatic. 

I love that we can get lost in moments and play whilst giggling our heads off, I love that I can get kiss after kiss and cuddle after cuddle, I love that there’s an innocence about J and he’s not bothered by life’s standard troubles, I love that he loves me and I’m the most important person in his world most of the time!

I don’t love that he can’t cope with certain noises or busy places, that he doesn’t manage well if he needs to sit still or stay on one place (this makes weddings and similar events very challenging for him and us), that he can’t tell us what’s upsetting him or communicate some of the things he wants or needs and I certainly don’t love that he can become so distressed by things that he works himself up and ends up being sick.

Life with any child can be unpredictable, hectic, dramatic or at the very least changeable. Life with autism adds more unpredictability and drama. Something J does ten times can be different the eleventh time. We can’t ever take it for granted that he has learned or will remember things. One example would be walking to the park. He could listen and stop at the road on ten separate occasions in a row. This doesn’t mean that on the eleventh occasion we can allow him to run on ahead and listen for the instruction to wait or remember to stop at the road. This means always being on guard, being prepared for anything to happen and always assuming that the instructions will be forgotten or won’t be followed. Always better to be safe than sorry. As my mum’s gran always said ‘the only peace is eternal vigilance.’

Is this a common thing for others? What strategies do you have for helping your child or coping with the lack of consistency? 

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A Mum Track Mind

How well do I know my child?

J recently celebrated his sixth birthday. He seemed more aware this year that it was his day and that things were for him. It got me thinking about his thought processes and just how well I understand them and if I get it right most of the time.

When your child is non-verbal it can be very difficult and frustrating for both them and you. It is hard to fully understand what they want or need. Often it’s a guessing game of elimination to figure it out and finally give them what they are looking for. We have taken part in many activities, workshops and courses to try to help us to meet J’s communication needs, to try to support his development and to try to understand him and his world a little better. It’s been a long road with many ups and downs and bumps along the way. Being honest, we’re still on the journey and finding out new things as we go. 

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Benefits of being an Autism Mum

Firstly, the title is for effect. I’m not a big fan of the term ‘Autism Mum’ and only use it when it’s the only succinct way to describe what I’m talking about. I don’t mind other people using it, I just try not to use it myself. I’m just a mum. I have a child who has autism, so it is a big part of our lives. I’m not however a mum to autism, I’m a mum to my boy. I’m here to help him with his difficulties and celebrate his achievements. Not to label him and allow it to limit him as a result. Secondly, I use the word benefits in a loose, tongue-in-cheek way to describe the following list!

1. The ability to function on only a couple of hours sleep.

Most parents of young children will relate to this one. It’s the role of the young child to keep their parents awake or to waken them at regular intervals throughout the night. If you have more than one child they will usually take it in turns throughout the night to do this, thus keeping you awake for as long as possible with minimal disruption to their own nocturnal routines. If you are a parent of a child with autism, it’s likely this will continue long past the recommended time limit found with ‘neurotypical’ children.

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