Autism diagnosis journey #1

Journey #1 began when J was 3 years old. As his mum I knew he was full of energy, strong minded, independent and very hard work so I sought out professional opinions and help for him.

But...

Instead of help I got a single parent family worker who came to the house with reams of paperwork, telling me how to parent my child. When she saw that it wasn't working she said there was nothing else she could offer.

Next, surrounded by people confirming the issue must be with my parenting rather than anything else, I completed a parenting course. I had already tried all of the ideas and strategies they suggested, but when I pointed this out to the course facilitator, she said there was nothing else she could do.

Then he started in year 1 of infant school. I had such a battle every morning getting him there safely, then dreaded the afternoons when all the parents gathered under the small roofed area, waiting for their children to come bouncing out of school with drawings and smiles. I was always the one who the teacher needed a minute with. Always in teacher speak he had been full of energy, overly eager, the leader etc. He would scream, kick, cry and shout every day on the way home. It was a mile walk home every day like this.

Next, I approached his teacher, the SENCO (special educational needs coordinator) with my concerns. She sent me to the headteacher.

I demanded a referral to CAMHS (child and adolescent mental health services) for some help for my son at this point.

The paediatrician called us into his room after months of waiting for an appointment. I had read the riot act to my son before the appointment, told him to please behave and then we could go to the park afterwards. We went into the room, both sat on the clinic chairs and I confirmed the essential details to identify us as the correct child and problem parent. He then told me that because my son had sat on the chair for the whole five minutes it had taken to confirm that, there was nothing wrong and he discharged us. The end.

Honestly, surrounded by people who also thought and said it was all down to my parenting I accepted it. Deep down I knew they were wrong but what else could I do? We never made it as far as CAMHS, the school SENCO didn't think there was anything he needed help with, so it must be me.

This went on for years, with him going to three primary school in total, finally being taken out of school and home educated after he was bullied and the school did nothing to address it.

By chance, we ended up moving to another county, where there was far more awareness of special needs, disability and mental health, and by now journey #2 had begun so I was more aware of our rights and the people I needed to fight against to get support for my children.

The move was obviously a huge change and it brought to light a large number of triggers, behaviours and difficulties in my children. Diaries were kept, notebooks filled, appointment made and referrals sent in triplicate until finally CAMHS agreed to see him. By now J was 11 years old.

We had the initial appointment where they checked the essential details again, talked about parenting styles, to which I immediately stated I knew it was not due to my parenting and was told the wait for an assessment was around 18months. There was no way he would have still been living with us as a part of our family if we had waited that long so I sought out an assessment team in Norwich and took him over there for a private assessment. Lo and behold he has autism. He actually has a part of the autism spectrum called PDA (pathological demand avoidance). The moment the team told me they could see his difficulties and knew how to help I cried. I had done a lot of research by that time into different possibilities of what might be happening for him, but to hear someone else say it as a confirmation was still a shock and a relief all at once.

I took this diagnosis back to my GP and local CAMHS and demanded he be seen by a psychiatrist. It took a further eight months of arguing with them that he needed the support and help for him to get that appointment where he was able to discuss treatment options. He was 12 years old.

Nine years of fighting the system.

Nine years of being told it was all down to bad parenting.

Nine years of meltdowns, bullying, terrible education experiences, no support.

Nine years of dragging this poor anxious, autistic, overwhelmed child through needless hoops of counselling, group therapy and appointments with people who didn't or couldn't listen to us.

Finally he decided to try medication to help him sleep and reduce his anxiety with a view to reaching a point where he would be able to seek talking therapy to manage his anxiety further.

Now that we understand what he has, we can understand how to help him through every day. Now we have a diagnosis for him, we can ensure he has the appropriate support in every situation.

He now follows his own interests and we cultivate them through providing extra opportunities for him to flourish and expand his interests. We focus on his emotional well being and every day living skills and repairing the damage that has been done in these years of being sent away by professionals who were lacking in their professionalism and knowledge.

He suffered with autism, PDA and sensory processing difficulties for 12 years before anyone listened to us and helped him.

He still looks like any other child without additional needs, so people expect far too much from him and project their own lack of understanding and ignorance onto him. This is his biggest battle everyday and something we are trying to change.

When you have that little baby and you promise to love them and always be there for them, you know them better than anyone else in the world. As they grow and develop that doesn't change. No one will have written a book about your child, no text book or lecture will ever be about your individual child. No matter how many times others tell you different, do not give up if you know your child needs help. Keep going until you find someone who can listen and educate yourself on your rights.

#Autism #PDA #CAMHS #Parenting

Welcome back

It has been a looong old time since I wrote in this blog. There are multiple reasons for this, but the main one is because my focus shifted when my own health deteriorated.

I have been running a separate blog for a year now, but haven't found it as accessible as this one so have decided to return here.

If you are interested, my 'gap year' has been using a wix blog called mummyonwheelsuk- when mummy needs a wheelchair:https://parentstothree.wixsite.com/website

I am going to see if I can bring my blog posts over from there so it is all together...wish me luck!

I am writing this during week 4 of the coronavirus lockdown in the UK so have a bit of time inbetween everything else to have a go at this.

See you later.

Dudley Zoo

I have to confess, until we went to The Pet Show last year, I had never heard of Dudley Zoo. It took us almost a year to finally make it there for a day out, but we finally made it last week.

We were prepared for a hilly walk- the zoo is set on the site of Dudley Castle, with the castle in the centre of the zoo. We had the special pushchair, drinks, picnic, coats, ear defenders etc all with us.

I will start at the beginning- the car park. We went on a cooler day, but still in the school summer holidays. The car park had plenty of space, but we really needed the chair to get from the car to the zoo entrance. The surface is gravel which leads out onto a tarmac pavement to the entrance, which is uphill.

The zoo entrance itself is indoors, the same location as the shop. The staff there didn't even look at our DLA letters, but we always have them anyway just in case someone actually looks at them one day. The lady who served us mentioned some maps and daily talk guides were somewhere roughly behind her, but with the children all so eager to get through the entrance I wasn't able to really listen to her. It would have been better if she had handed me one of each to be honest. The information is all on their website, which we accessed with good signal throughout the day, and there are plenty of maps around the site on boards.

Once through the entrance, the usual search for the toilets ensued. For your information- they are into the zoo, then turn left and they are next to the chair lift. The chair lift! Oh....you have to be 1.2m tall and over 7 years old (why is beyond me) and each chair is single seated. So...my very nervous, unpredicable and anxious 9 year old was tall enough and old enough to go on but I was terrified she would panic half way up it and there would be nothing I could do. My over confident 6 year old was too short and too young to go on. I can't understand why they don't change some of them to double seats. Anyway, moving on....

There is a land train that takes you from the bottom of the chair lift to the top via a longer route. This has a carriage at the back to put pushchairs in, but with everyone ramming their buggies in there like they were, we didn't are risk the chair getting damaged or falling out. We walked up and later on my husband walked down whilst I took the children on the land train.

I thoroughly recommend either having two able people who can carry the chair up and down stairs, or following the red dotted line on their maps. There are hidden steps around the site, all of which are shown on their map and easily avoided with the red route, but that often means taking a very long way around. Frustratingly it seems they could replace some of these steps with a ramp- not all of them seem possible to me- but they have stuck with the steps. Maybe it is something to do with their age or something, I really don't know. What I do know is that we need to go back again to turn right out of the zoo entrance to see the lorikeets, chimps and whatever else was up that way as there was no way we were getting past the funfair and back up another hill at the end of the day.

There is a sign at the entrance to the lemur walkthrough stating strictly no pushchairs allowed. With the combined age of the two girls 'working' there being less than my shoe size I decided not to even try explaining the special pushchair we use is actually in lieu of a wheelchair as my daughter wasn't that keen anyway. The general feeling from all the staff on the site is that they are not bothered. They don't want to be there and can't wait to get home. This is a real shame.

The worst part of our day was when we decided to have a rest by the sea lions. I only wanted to get some crisps and drinks- we can't eat or drink anything out, ever. The queue was so slow I can't even describe it to you. There were five members of staff behind the counter, two tills on the go and yet they seemed to be doing nothing. When we finally got to the till I wanted to pay for 5 bags of crisps- he couldn't find them on the till, then I ordered an orange juice, to be told they don't do it (it was on their menu above his head), a latte and three hot waters. I also needed a spare cup for the bottle of orange juice my son then found in the fridges behind us. I paid and we waited, and waited, and waited. The people before us were still waiting for two hot drinks, then our latte arrived with no hot waters. I had to remind them about those- fair enough, it happens....then I asked for that spare cup. I asked one girl, she stared at me and ignored me. I called her and asked again. Nothing. Then I asked the boy. Nothing. Then I got the attention of a second boy- the third member of staff all of whom were stood right next to eachother. I told him I was waiting for a spare cup, which I couldn't reach myself on account of the other people still waiting for their hot drinks, and that there were literally three of them stood there doing nothing and ignoring me so could he please just reach up and pass me a cup. Once cup. At last.

It seems, from what I overheard outside, that this was not just our experience there.

I should mention that my son momentarily lost his mobile phone and someone had handed it in to this same cafe. When I telephoned it they answered, didn't tell me where they were, couldn't confirm which animals they were near, but when I kept guessing they were able to confirm. My son did get his phone back. Perhaps they should have played one of the cafe games whilst they had it in their possession.

There are lots of different animals to see and little areas for the children to play and let off some steam on the way around. We had our picnic near the top of the chair lift in an area that seemed to be an old room of the castle. This had a lovely view but I did wonder where you could have a picnic in bad weather.

I liked that there weren't lots of temptations to spend more and more money during the day. There was a facepainting kiosk near the dreaded cafe, and a sweet stall near the entrance, but not much else. The exception we found was a harnessed trampoline in the castle walls. Our children all thoroughly enjoyed that as none of them had been on one for years.

The funfair was reasonably priced too. For the three children to go on everything they wanted to it cost us £15- far cheaper than at a travelling funfair. They have a token system so I would recommend adding up the tokens you will need before you go and buy any as it is cheaper to buy more.

We came away with lots of photos of our children poking their heads through boards pretending to be the different animals, photos of their favourite animals from the day and candyfloss.

Hoo Farm

Their glossy leaflets grabbed my children's attention many a time over the last 18months or so, and we have never made it until now.

I found a family ticket on Wowcher for use midweek during the summer holidays and it was excellent value compared to the normal entrance prices.

We arrived and found the tiny car park was full, so I left and parked on the pavement outside. The overflow car park is a long walk with three children with autism and a wheelchair and there were no parking restrictions in place. On our walk back in, which is along the main driveway, not ideal with impulsive children who are so easily distracted as mine, I noticed there was actually a farm gate to the left as you enter the tiny car park (no idea how anyone would turn a car to get in there unless they had been before and knew it was there) and people were parking in this area too.

The short walk in told me all I needed to know about the place- it is run down and needs some money putting into it to keep people visiting. I had suspected they may be a little like this from the fact they are on sites such as Wowcher where only a small proportion of the cost of tickets actually gets passed on to the attractions. However, we aren't a family who are wowed by flashing lights and busy places, so this didn't necessarily matter too much.

She made us wait whilst she sorted out piles of leaflets and papers- again, not ideal with three autistic children eager to get in there.

When we went in I spotted one instant issue. The floor is gravel throughout. Not just a thin layer of gravel, thick, big, chunky gravel so all day pushing the chair through it was terrible. My son had to take over a few times and my daughter had to keep her ear defenders on all day because of the noise of the gravel!

There is one disabled toilet in the place and we had a long long wait for this which turned out to be a member of staff taking FOREVER to 'clean' it. She must have missed the need for more toilet paper and the spiders! The mens only has one cubicle so it was difficult for my son to be able to use a toilet too.

The areas as you walk around bear little resemblance to the map you are given on your way in, and there is so much information provided on the paperwork that my children put it in my bag.

There is a good variety of animals to see, animals to feed and activities to do there and plenty of talks throughout the day.

We were unfortunate enough to be there on the same day as a YMCA trip who let the children ruin the under 5's play area and throw balls at us whilst they chatted and one leader was lay down on her side on the sofa. I never approach people like this, but it was so bad I went and got one of their leaders to make them aware of how unacceptable it was. If a ball had hit my youngest we would have had to leave and it would have ruined her day, and ours too. The leader told me that their group had challenging children in it and that was why they were so loud. Hmmm, no. My children would be classed as challenging by most professionals, yet they are not allowed to behave in this way in areas designated for children of a specific age that is not their own, or at all, and if you know you have children who may need more stimulation to aid their behaviour then you provide that and don't allow them the time to be distracted and display such undesirable behaviours, that was literally their job that day! Thankfully they left before us so we had some peace.

Breathe.

We sat at the tables by the under 5's play area and picnic area for our packed lunch so our youngest could wander safely (she can't sit still for long). Then we discovered the over 5's area, most of which wasn't working.

Towards the end of our time there we went to the fox talk. The member of staff running it announced that she had turned off the electric fence and that people had to be careful of their footing as they entered. She said this loudly, as if addressing us all. My children and another couple of families assumes- fairly so- that she was talking to them too and went to the gate to go in, to be told it was only for the four people who had been stood next to the woman and were on an experience. I felt so bad for all the children who had assumed this and it was completely the woman's doing. I was only glad that mine didn't take it too badly as I was able to say I had seen these encounters online and we could look at booking one maybe.

The pedal go karts were a hit - but the place needs to buy more and fix the ones they have, and the pirate water shooting game was equally as fun.

We visited their shop to break up the day a little and discovered £1.50 porcupine spines (which I would advise you buy at the end of the day, not like us as it stuck into my hand everytime I went into our bag after purchasing it), tattoos and lots of overpriced goods as well as a few pocket money priced items. I had to say no cuddly toys due to the prices so be aware of that if you have a cuddly toy fan as I do.

The animal food was a great idea on the way in. For £1 a bag each they hand fed deer, sheep and llama as well as walking in with the wallabies and hiding food for them to find later. Our walk in with the lemurs was short as the lemurs weren't playing ball and preferred to watch the people walk around their enclosure as they sat in their house - some irony there. There was a very friendly donkey who had lots of cuddles from my youngest every time we passed very slowly and reluctantly by, pigs, goats and much much more.

My children love animals and find them relaxing and comforting. Even just being around them has a profoundly positive impact on them, so for us it was still worth the day out. If your children aren't so keen on animals then there are far better places you can go within the area to see animals and have better facilities too for the same price or less.

If you are going to visit, make sure you take a supply of £1 coins with you for the pirate water shooting game, shark teeth, fossils, bouncy balls, stretchy animals and more.

For those with sensory issues it is smelly, full of old spider webs and spiders (more than needed), the gravel is a disaster and there is a lot to process as you walk around.

For wheelchairs the gravel is a nightmare, as is the tiny shop.

For autism the car parking, waiting to get in, staff being ambiguous and fact that it barely resembles the map is difficult.

I would never go there unless it was on offer again. I don't know if a carer gets in for free with a disabled visitor as on this occasion I was just glad when the lady deemed us worthy of her time to admit us to the place.

Black Country Living Museum near Birmingham

Our first visit here was during the summer holidays and using tesco vouchers. They have an offer currently, where if you purchase full price entry tickets then you can use them for entry for the next 12months, but on a first visit there is no guarantee we will stay more than five minutes, let alone be able to return anywhere.

Despite the time of year we found plenty of spaces in their car park and were able to park close to the entrance, with space to get the chair out of the car. There is a charge for parking, but this is standard at many attractions in the area unfortunately.

Our first impression upon entering was not great. Staff were too busy chatting to eachother to welcome guests and when I interrupted their conversation about their weekend plans to ask where the disabled toilets were I received abrupt directions and was told we had to join the queue. Instantly we were split into two. Husband joined the queue whilst we all went on the toilet run. I then had to undo their safety barriers to rejoin the queue as there was no way back to my husband without doing this. Thankfully the queue wasn't too long and we were reasonably prepared, but I do feel this is an area they need to improve upon.

My eldest spotted a vintage bus almost as soon as we were through the entrance gates (incidentally, for each person who is disabled and has proof, there is one carer admission for free), and bolted down the path, closely followed by my other two. Having never been here before I was unsure of the safety in the area, knew they would be lost if out of sight and so swiftly followed suit, abandoning my husband - again- with the chair that wouldn't fit in the bus. (on their website it states that wheelchair friendly transport is available if you telephone the duty manager, but I wonder if that has ever been tested- especially with a chair that people always annoyingly assume is a pushchair...I digress).

Catching this bus was actually a god send as it gave us a tour of the area and let us find our bearings- and the park and fun fair.

My plans for the day had been simple. Arrive, try to get them all in there, try to make it to the fun fair, then the park for a picnic and anything else was a bonus.
It turned out they all came up with this itinerary themselves once they spotted the helter skelter anyway, and we also managed a whole lot more.

The fun fair had some terrible reviews that had made me wary before our trip, but I found it to be perfect for us. The tokens aren't too expensive and there is a good variety of rides, without there being too many. There is no tacky fairground music, no flashing lights like at the modern fairgrounds, and they even have a mirror house. Our children LOVE the mirrors. We were in there for far longer than we should have been but who cares?

Our picnic in the park was relaxed, helped by the free deck chairs and plenty of shade available. As expected there were ridiculous queues for the chip shop, where we could have eaten chips, but a couple sat on a bench near us had queued for over half and hour for their chips, and decided they tasted just like normal chips. That made me feel a bit better for not queuing up.

The park itself is terrible for disabled visitors. There are steps everywhere, so the only piece of equipment that is accessible is a small roundabout that has bars you can move to put a small wheelchair on. As ours don't have physical disabilities we were ok, but it was so busy there we couldn't stay very long.

We let our children lead the day as this is what works best for us, and they chose to cross the bridge onto the street side, closer to the canal. We asked about ingredients in the sweet shop, but the girl didn't know. She told us 'I think these should be safe', which frankly isn't good enough. I know they are trying to be authentic, and I obviously wouldn't buy anything that I couldn't be sure of anyway, but does the law not apply here? That said, the sugar mice were too cute to resist, and I know they are ok for my youngest and would keep her going.

We eventually found the photo studio, but there are slots you have to write your name next to and these were all booked up by the time we arrived there. This was a shame as I did wonder how many of those were children messing around and would actually be free later on, especially with the smiley faces drawn there.

This led us to the boat trip area on the map our son had spotted. Across another bridge is a canal visitors centre, totally separate to the museum but with no barriers or people checking tickets. In theory we could have parked there and entered the museum for free, as people from our boat trip afterwards. This was a tad annoying given the admission prices for the museum, but maybe they will realise this one day and tighten up on it. The boat trip itself had no disabled pricing for children, and the lady told me where to leave our 'buggy'. I saw no point in correcting her, but it is annoying when people don't realise. I asked specifically how dark the tour would be, how long and how long we would be in the tunnels for. She answered my questions and my daughter was satisfied that she would be ok to go on the trip.

However, in one of the many dark caverns with noisy videos and lights playing, our youngest had a wobble and demanded to leave right now.

Obviously we couldn't do that, so I had to spend the time holding her so she didn't try to leave the boat, and try my best to keep her safe, whilst reassuring my eldest daughter that everything was ok and safe and had been there for a long time. I wish people were honest and had told us about these things. There is no way I would have taken my youngest on the trip if I had known there would be loud music and videos shown with the lights out in tunnels and caverns for that amount of time. My eldest was out out too- he really desparately wanted to try legging, but people had already been picked by the staff so he didn't get a look in. It would have been useful to have been told this, or asked if anyone wanted to try when we boarded the boat. This experience cost us more than the entrance to the museum had. But atleast we did it. Never again, but we did it.

Back in the museum again and we managed several more vehicle trips around the streets, played with some old fashioned toys and tried skipping in the street. My son had a look in the motorcycle shop, then got awkward and left when the man started asking him unwelcome questions about school and bikes. The lady in the pawnbroker was excellent. She seemed to realise my daughter was struggling to speak to her and became very visual instead in her explanations of how the shop would work. My daughter learned a lot from her.

The toilets around the museum were a bit hit and miss. Some were very noisy and others were ok. We had funny looks from people when we used the disabled, but we are used to that and ignore them.

We didn't make it to the rock and fossil shop, or the other buildings in between the park and the entrance, but it is looking positive for a return visit sometime soon, knowing what we now know we can plan a day there much better.