Autism diagnosis journey #2

Journey #1 was underway but hitting obstacle after obstacle when it became clear that G also needed support, but in a very different way to J.

G had a trauma in her young life which brought many of her difficulties to light and also led me to engage with all the support services going in the local area, and then again when we moved to a new area.

Unlike with J, G's difficulties are easier to see from the outside and more 'typical' of autism in girls.

G went to two primary schools, having to move abruptly following her young trauma and finding it incredibly difficult to change to the second school she needed 1:1 support immediately and her teacher realised this without me having to say anything which was refreshing.

However, it was so distressing to ave to drag her into school everyday we made the decision to stop putting her through it and deregistered her. She is now home educated too. If I had known that home education was a legal and valid alternative way to educate your children I would have never sent any of them to school. School can be brilliant for some children, can be the making of them, but for others who are bullied, slip through the net, learn differently or are extremely anxious it is a living nightmare.

I took G to see our local GP with a diary of my concerns and asked for a referral to CAMHS (child and adolescent mental health services). The referral bounced back so I referred her again myself after finding a copy of the referral form online. I decided to bombard them with paperwork and evidence so they gave her an initial appointment. Ironically it came through as two days after J's initial appointment after all the fighting and arguing (they call this advocating for your child but it feels more like going 10 rounds with Anthony Joshua).

The mental health nurse said we would have a long wait to be seen, but I knew that already.

In the meantime it was becoming more apparent that A was also displaying symptoms and difficulties similar to J, so journey #3 was about to begin.

I didn't know which way was up anymore. I decided I needed to try and help one child at a time.

Whilst J was waiting for CAMHS to see him after his diagnosis I took G to see a private occupational therapist for a sensory assessment. They picked up on a multitude of issues I had never even considered, but which instantly made sense.

With the sensory processing difficulties G was coping with fresh in my mind I started to think about J, so booked him in for a private occupational therapy assessment too.

Meanwhile G had an appointment through with CAMHS thanks to a new ruling which was designed to cut waiting times. She was assessed in a tiny white windowless room, in a long corridor reminiscent of a ferry. There were two women she had never met before, a table, and a chair for her. I wasn't meant to stay but there was no way I could leave her. She curled up in a ball on the chair and shut down entirely.

She was diagnosed following the assessment with high functioning autism (they don't call it Asperger's anymore), anxiety and selective mutism with signs of post traumatic stress disorder.

The NHS occupational therapist saw her and discharged her after one appointment because they can't do a sensory needs assessment.

The NHS speech and language therapists saw her and discharged her after one appointment because she can physically produce the sounds for speech.

There is no help for her. No support to help her through her problems. She self harms, has dark intrusive thoughts, struggles with depressive episodes and pain. She is only 9 years old.

The NHS could offer her six sessions of counselling but it would take her that long to be able to trust someone enough to speak to them. She has been through similar with Mind. They offered her sessions with a lady who promised her she could go back if she felt low again, but then the lady left. Services are not good enough and my heart breaks for her.

#Autism #SelectiveMutism #SM #Aspergers #PTSD #anxiety #CAMHS #mentalhealth

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.