Planning a family holiday that caters for different needs and interests

At Christmas I wrote a post about trying to have a Christmas that was suited to everyone’s needs. Well, now it’s summer and we found ourselves again in a situation where we needed to really consider everyone’s needs and likes and take these into account in planning where and when to go on holiday. I know everyone does this when they plan a holiday but for some reason it seems to be a minefield for us at the moment, given the children’s ages, J’s needs and my husband and I’s leave dates. Combine all of this and we had a major headache on our hands.

We had been looking at places to go on holiday during the school summer break. There were many options; go abroad, stay in the UK, camp, book hotels, go to a holiday park? All have appeal but equally seem to throw up issues for J and his needs.

If we went abroad how would he cope with the airport, plane, transfers, heat? He’s not great with confined spaces and is a very early riser, so camping isn’t an ideal solution either. A holiday park seems like a good idea, though again busy at this time of year and certain facilities or noises could be problematic for him too. Our final option was to look at booking a hotel/hotels and this was our preferred option, though a lot more expensive than our other ideas. 

Of course when planning our holiday J’s needs are important, but our other children’s needs and enjoyment also need to be factored in. We feel that they lose enough to autism at times and didn’t want our holiday to be a source of yet more compromise and missing out for them. With all of this in mind, our holiday this year was a little bit of a mixed bag. You can look forward to the posts about our individual adventures coming soon πŸ˜‚ 

We started off staying at my husband’s parents house in the Midlands. Whilst there we made day trips to Gulliver’s Kingdom theme park, a visit to a kids park with a water play area in Matlock and Fradley to see the canal and narrow boats (as well as to enjoy some lunch and some very tasty ice cream!) It was exciting for the children to spend time with their grandparents and see some new places, as well as visiting some familiar sights from previous trips. 

Wales was a place we had never visited, so we decided to visit for a couple of days and camp, while visiting some of the lovely places we wanted to see. J did not cope well last time we camped. The space was too confined and with him getting up so early all of the time, no one else can sleep in the small space. However, we really didn’t want the other two to miss out as they love camping and find it so exciting. We therefore took the difficult, but best all round, decision of taking the younger two to Wales for two nights while J stayed with his grandparents. He adores them, they dote on him and he had access to as much water to play in, as well as visits to parks as he wanted. His idea of heaven on earth!

While in Wales we went to Penrhyn Quarry where my husband went on the longest zip slide. We visited Portmeirion, the lovely village which is the setting for The Prisoner.  

For our stay we camped near a place called Criccieth which had a lovely beach and wasn’t too far from Porthmadog. Our campsite was small but quiet and clean. The younger two were very excited about camping in the van and went for little walks together round the site. It was lovely to see them playing together and mostly getting along! 

After Wales we planned to return and pick J up before heading for an overnight stay in Southport. When we saw that our journey back took us almost past Liverpool we changed our plans slightly and arranged for my husband’s parents to meet us in Liverpool, where we all stayed overnight. This was a great decision. I’ve never been to Liverpool before and it turned out there was so much to see. I would love to go back and visit the museums and other places we couldn’t see fully when there with the kids. We stayed in Birkenhead and took the ‘Ferry cross the Mersey’ before doing the bus tour and returning by train. The kids had a great time and we managed to fit a lot in to the time we had there. 

Our final stop was Southport where we enjoyed the pier and the kids played in the playground. We visited the amusement arcade (as you seem to be supposed to do at the seaside) and enjoyed walking in the sunshine. Our hotel was a different story right enough, like a sauna inside and didn’t make for a good sleep. Thankfully we were only in it for one night! 

As you can see we packed a lot in to our trip and had lots of adventures. We tried our best to take account of everyone’s needs and likes and accommodate interests. I think we mostly pulled it off. It wasn’t a relaxing holiday but it was a fun adventure and something we can look back on and be glad we made all the effort to do it. The kids had a ball and if we are honest so did we. We just need a holiday to recover now! πŸ˜΄πŸ˜‚

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Fear of Dogs

Firstly, let me be clear, this is not an attack on dog owners. I’m sure most are careful, considerate and nice. The people I’ve encountered seem nice and I’m sure nothing they have done is deliberate or intentional, merely a lack of awareness or understanding.

J is terrified of dogs. Not just a little bit afraid or unsure – extremely terrified. He can cope with them at a distance; on tv, on the opposite pavement and miles down the road. Any time they come even remotely close to him he starts flapping, tiptoe jumping, whining and trying to climb up people’s legs whilst also trying to run away or hide behind them. The terror is written all over his face and it’s very obvious that he’s scared. He has no reason to be scared. He has never been attacked by a dog or even growled at, but he’s scared nonetheless. This can be problematic when we go out for walks. If we go to the local park, loch, nature walk or even just round the streets near our home he can go into major meltdown if a dog gets too near. 

Recently my boys were at the park with my mum for a walk. It was raining and they had been stuck in all day, so it was a welcome release. While they were walking round and watching the trains pass some people passed by with their dog. J got upset and clung to my mum. The people smiled, said the dog wouldn’t hurt him and called it back over. J resumed his walking/trainspotting until the next dog arrived. This time the dog ran over and then ran round him in circles. He wasn’t able to get to my mum straight away and this made the situation worse. The owners also didn’t take the dog away very quickly. They laughed, called the dog a few times, said that it was harmless and just trying to be friendly; but they didn’t get it away from him. He was whimpering, crying and jumping up and down at this point. 

My mum went over and pulled him away and put him behind her. The dog attempted to follow and still the owners didn’t intervene. My mum glared at them and it seemed to send the message that what they were allowing to happen was not OK. Why it took a glare to communicate this I have no idea. Surely J’s distress should have been signal enough. It took him a long time to calm down and he whimpered/whined the rest of the way round the park. He was still quite upset when they hot home. This is also not the first time something like this has happened. 

I’m not looking for, nor do I expect, dogs to be kept on a lead at all times. I know many people and children like dogs and would love them to run over for them to pet. Not everyone does though. What I am asking is for people to be aware, to show understanding and compassion. If you can see that someone is clearly very distressed by your dog running up to them, please don’t just laugh it off and allow your dog to keep running around them. Don’t assume they are overreacting and just need to get used to the dog being around them. 

My son has no way to know that he can trust your dog, no way of understanding it’s intentions and no way of reasoning out that he’s not in danger. He just sees something he’s unsure of, invading his space and not retreating despite his protests. I’m sure if you were in his shoes for even one of these encounters, you would feel differently about allowing it to happen again. I’m sure you wouldn’t like to feel that extreme sense of terror and lack of ability to control the situation. I’m sure you wouldn’t appreciate someone merely laughing it off, smiling or saying that the dog is friendly and won’t hurt you. I’m sure you would just want your ordeal to be over and to never have it happen again. 

Please, next time you are out with a dog, consider that not everyone is as keen for the dog to play with them and greet them, the way you are. Not everyone experiences or processes encounters with dogs in the same way you do.  So, I’m not asking you to keep your dog on the lead, but I am asking you to move it away and not to allow it to terrify my child in the vain hope that he will get used to it. 

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Autism’s hard, isn’t it?Β 

These were the words my five year old said to me yesterday. It was just after he had come in from the back garden, where he had been trying to play in the water with his older brother J. J loves water and he’s not too keen on sharing it with anyone else. B had tried many times to play with him and when that failed he tried to get his own water to play with, only for J to come and take over that too. He eventually just gave up and came inside, where he climbed up onto my knee for a cuddle.

His words got to me and my heart broke for him. He has so much responsibility on his little shoulders. As well as the normal things he’s asked to do to help his brother there are the unseen things, the things we don’t really think about. The efforts he makes to play with his brother, the allowances he has to make for his needs, the times he has to forgo doing something he wants to accommodate his brother and the times he keeps his sister occupied so that we can deal with one of the many disasters that seem to befall J.

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He’s right, Autism is hard. It’s hard for everyone. For the person who has autism, for their parents, grandparents, siblings and at times their wider family. It has an impact on everyone. It is hard for each person in a different way. For me it’s hard to watch his tears when he can’t tell me what’s wrong. My husband has to carry and lift him when he’s sick or distressed. For us,  as his parents,  it’s hard by being physically demanding and emotionally draining to see him being sick again or observe another child doing something J will most likely never do. For his grandparents it’s hard because he needs more looking after than a neuro-typical child of his age. His cousins need to be more patient and show more tolerance, as well as helping him with many things. The rest of our family make accommodations at parties and indulge his interests, in spite of the noise or repetition involved. His sister is a little young to fully understand, though she can be on the receiving end of a push or shout because she’s doing something he doesn’t like or has something he wants.

For B I think the impact is hard to take because he’s fairly close in age to J. Under different circumstances they would play meaningfully with each other and explore their surroundings together. They would probably still fight like cat and dog but they would also be partners in crime. B would have a big brother to lead the way and show him how things are done. He wouldn’t have to move aside to stop his brother having a meltdown or play alone because J just isn’t interested in joining in.

Don’t get me wrong, it’s not all doom and gloom. Our children are very happy and do lots of fun and exciting things. They all get lots of attention and experiences. We are always taking them out somewhere, going for walks, visiting parks, going for trips to the seaside or visiting soft play centres on rainy days.

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We also have positive experiences with J. He’s very loving, often wants cuddles and regularly gives us big smiles. His joy is simple and he loves to show us when he’s happy. He tries so hard to achieve things and enjoys sharing his success with those around him. The delight lights up his face. B is a little more complicated and a little harder to please in many ways.

Its at times like these, when B bares his heart and shares his frustrations, that I wish I could fix it all for him. That there was some miraculous way I could give him the big brother he craves and the playmate he would love. I hope that in time W will become this for him and that J will also be able to interact a little more fully. I pray that he can be strong enough to know that it’s not personal and that his brother still loves him and needs him around. Most of all I wish that he didn’t have to feel this way at all,  but I reassure myself that it will help him to become resilient and to realise that life can be hard. Hopefully it will mean that he can appreciate that not everyone has an easy time in life and maybe that will help to make him more understanding and kind. I suppose really I just want something positive to come from his hurt and the things he misses out on.

So yes, Autism is hard, though I live in hope that it will help to make us better human beings and stronger people.

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What have I learned from 2016?

The end of another year and the beginning of the next are upon us again. It hardly seems like any time since this happened last year. Admittedly last year it all seemed a bit of a blur, as W was just under 4 months and I was still in that sleep-starved haze (which never seems to have gone away!) With another year over, I have found myself thinking about just what has happened or what has been achieved during the last twelve months. If I am being honest life has been so busy that it’s whizzed past and I seem to have achieved nothing substantial. With the way things have been lately I should probably just be grateful that I’m still (almost) standing now that we’ve reached the end. 

It’s been another busy year; working, looking after the kids, learning new things about J and his needs, celebrating W’s first birthday and seeing her grow from a helpless little baby into a cheeky and vivacious little girl who knows her own mind, seeing B start school, going back to work after maternity leave and various illnesses and injuries along the way.

It’s amazing how long a year can seem and yet pass so quickly. You can do so much and at times feel like you have achieved so little. My own health has definitely been a bit poorer than I would wish this past year and it’s something I need to make a conscious effort to improve in 2017. I’ve had quite a bit of trouble with my back and hips, especially in the last month or so. This effects how I can help J and what I can do with all of the children. I still have to do most of the things I did before, it’s just a lot more difficult and painful at times. 

I’m not a big fan of the ‘New Year new you’ stuff and don’t often make resolutions, possibly because I know I won’t really stick to them. After the year that 2016 has been for me I feel it’s a good time to challenge myself to improve my health – physically and mentally. I think feeling sore or restricted has also had a negative effect on my wellbeing and I need this to improve too. I’m heavier than I think I’ve ever been, my fitness levels are terrible and even my skin is showing the strain!

This week my subscriber update email from The Mighty came and it related to making resolutions, taking better care of yourself. The section that interested me was the 30-day challenge. It’s aimed at promoting self-care. The article discusses other health kicks and workouts etc, highlighting that although these seem great in theory it can be difficult to stick to or participate depending upon your own circumstances. People with chronic illnesses etc can be unable to maintain fitness regimes or carry out specific exercises and this isn’t factored into these kind of programmes in any way. 

Although I don’t have a chronic illness; working full time, running around after the kids, caring for J and supporting his development all mean that I have very limited time for ‘self-care’ or fitness regimes. Fitting something else into our already full and busy lives is virtually impossible. To make a resolution like this would only be to set myself up to fail. The suggestion for the thirty day mighty challenge for January was to write a journal for the next 30 days. This is something that has been suggested to me before and I also remember reading a post on another blog about the benefits of journaling. 

I know I have a lot to do to improve my health and it will be a process which won’t happen overnight. I also know that journaling isn’t a weight loss diet, it’s not the exercise or fitness I so badly need and it won’t fix my back. I think it’s a good place to start though; to work through how I feel, why I want/need to make changes, what those changes should be, how I can make them easily slot into the day-to-day and to record how I feel along the way. It should be something I can fit in during a coffee break or for 5-10 minutes once the kids are finally asleep. 

My hope is that it will sort my thinking and instil a more positive attitude to improving my health. I hope that this will mean I’m more invested in it and that it will be more likely to succeed. Maybe I’m hoping for a little too much but if nothing else, recording my thoughts will mean making a little time for myself and reflecting on my feelings to process them a bit better. It will help me to vent frustrations and recognise the good things that happen. 

In getting back to the original point of my post, I guess what I have learned from 2016 is that I’ve not been taking care of myself. I’ve put the needs of my family above my own, as I’m sure all parents do. Though I think it’s more than that, I haven’t just put their needs above mine, I’ve neglected my own feelings, needs and care entirely. As a result my health has paid the price and I’ve realised I need to sort it before it’s too late. After all, if I’m too run down and neglected by myself, I won’t be able to properly look after anyone!

Has anyone tried journaling already and found any benefits? What kinds of things do you record and do you find it helps?

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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 neice 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. 
We abandoned the present opening and revisited it a bit later when more of the same happened. Eventually I opened the rest of his gifts and left them out for him to look at and play with as he chose to. It wasn’t an overly happy experience for J. The positive thing was that we had learned some things not to do in future. From then on I did less wrapping, bought slightly less and made sure he opened what he had a bit at a time if necessary. 

As time has gone on he has gotten a little more aware of what Christmas is, loves the tree and decorations, knows about Santa and anticipates getting presents. He helps put out the treats for Santa and get things ready. This year he even found it hard to settle and was jumping up and down laughing and saying Santa. 

As he grows and develops hopefully his understanding will improve and things will get a little less stressful for him. In our house this year we had three quite different present bundles. W’s bundle was mainly bigger items which were built and laid out with a few things for her to open. B’s were all individually wrapped and mostly smaller items, Star Wars figures and stationery etc included as he enjoys drawing and writing. J’s was a mix and I had removed most packaging in advance. Many items were put into gift bags to enable him to open them easily and see what was inside. The things inside his stocking weren’t wrapped and just a few of his bigger boxed items were wrapped.

I don’t know if this was what made the difference but he really enjoyed opening his gifts and was happy to put them down to open others, before returning later to play with them. He seemed to enjoy it more this year, he was more aware of what was going on and less frenetic or upset. The excitement was clear and he was happily jumping up and down, eagerly ready to open or look at each gift in turn. 

It took a little more preparation and thought to make sure each of the children’s Santa present piles were suited to their stage and needs. It was definitely worth it though and helped it to be a little less stressful all round. Does anyone else have a specific way presents need to be set out or wrapped up?

The thing I had most difficulty with this year was trying to get all three of them in one photograph!

 Merry Christmas everyone πŸŽ„

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A Mum Track Mind

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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