Testing the new wheels out

Yesterday was an exciting day for me as my new-to-me tilt in space wheelchair was collected. It is wider than my previous self propelling wheelchair but has so many useful and helpful features. The side arm rests are height adjustable, the sides unlock and rise up vertically to allow horizontal transfers, the self propel wheels are quick release for transport or storage, there are two styles of headrest with it, a lumbar support cushion pad, leg rests with large foot supports, leg rests for raising your legs our horizontally, easy to use brakes, two ways for the carer to push the chair and easy tilting mechanism with hand brake for the carer to hold. I have been out in it today for the first time (going into the garden yesterday doesn't really count) and it has meant I could stay out all day with my family. I am totally exhausted and nearly fell getting into the car at the end of the show, but was able to lie back as I felt tired and relax my head, neck and back. My little dog perched on my lap all day distracted people from my legs and arm tremoring and those who didn't notice the dog didn't notice me either..... The invisibility effect of a wheelchair! I was worried about the chair tipping over backwards, sending my head first onto the concrete, so my husband stood on the back of the chair to prove that it wouldn't go anywhere.... Welcome demonstration although terrifying without notice lol. An unexpected bonus of the wheelchair today was as a hiding place for our 7 month puppy who was slightly uncomfortable with the show bless her. We have been to the shire horse show for the last three years, stayed all day every time and the children have thoroughly enjoyed themselves every year. This year they had more independence than ever before, having their phones with them so we could get in touch as needed. They were able to go to the stables area, chat to the grooms, meet the horses, take photographs for me, chat with people showing horses and wander around the stalls in the arena. One gentleman in particular was kind to them and brought a step out for them to be able to reach his horse, Poppy. They returned to see Poppy several times during the day, ending with them getting a wave in the grand parade which made their day. I don't know who the man is or which stables he is from but he really made a positive impression on them all and to wave to them in the parade was a lovely heartwarming touch. The showground where the show is held is wheelchair accessible with a lift to the upper floor that surrounds the show arena. Downstairs the arena is sectioned off with metal fencing which is too high to see over from a wheelchair, but the view from upstairs is much better if you can get the angle right to not be blinded by the lights. That took some practice but was well worth it. Despite how tired I feel now and how much pain I have in my body, I am glad we went and had a family day out, thankful for my new wheelchair and relieved to be home again without falling. This gorgeous horse stood out from the crowd in its class lineup and I instantly backed it for a win. I was delighted when they won their class and also qualified for horse of the year.

This was my view on the ground floor. Utterly uninspiring and resulted in my daughter taking video for me to see what I was missing. Thankfully it only took around fifteen minutes of negotiation to encourage her to move upstairs so I could see.

We ventured into the food hall for the first time this year and found a stall selling honey roasted nuts, olives and baklava. By the time they had me try every flavour my allergies would allow I was feeling pretty full, but we all love this food so I may have bought a little too much (these are delicious basil and mint olives).

Before and after. Well worth the adjustments for a better view of the show.

The infamous Poppy

Two years ago I took my youngest (I was driving and had full mobility then) to this same show and she met and fell in love with one of the mares. This week we are finally planning on going to see her at the farm attraction she lives at (I have everything crossed that she will be there).

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