It has been a long time since my last blog. I have tried to type many times how I feel and everything going on, but the truth is I just haven't been coping. S has been unbelievably hard and I feel that doors are being slammed in our face. It just seems like the world is out to prove I am a paranoid mum. Ask any decent mum and they will tell you they would fight any fight for their child, if you're a mum you will understand. I cannot even begin to describe the heartache a mum feels when she has to fight to get people to see the negative things about her child. No mum wants their child to struggle in life, no mum wants to admit their child is behind with their development and no mum ever wants to have to deal with those things as well as prove to the world that it is true.
Recently I have to fight a lot of doubt, not only from others but from myself. 'Is she really ASD?...Is it just something I am doing wrong?...Maybe that is 'normal'?' Self doubt is not helpful, it tears you apart from the inside. I am so grateful that this week I have seen a glimmer of hope and am again beginning to shake off that self doubt and prepare myself to start battling once again.
Over the weekend we went to S's school summer fair and a small birthday party. Things other children of S's age seemed to have absolutely no issues with. On Saturday (the day of the summer fair) S refused to sing with her classmates but was happy to watch. What then followed was a 2 hour long meltdown! Screaming and crying. She wanted a cake, then an ice cream, didn't want to eat something hot before that, didn't like everyone, wanted to go say hello to her teacher (whom we couldn't see), the music was too loud, she wanted a drink, she didn't want a drink.....the list goes on. Half a burger and one hug from a teacher a few sweets later, Daddy bringing her ear defenders and the crowds easing a little the mood started to shift. We stuck around to actually enjoy ourselves. Even had a small trip to the park on the way home where S was in her element looking at leaves and sticks. Sunday was party day and given it was a 3 hour party she did well. I have to thank the child's mum (N) for this. Being an OT and having spoken a few times she had approached me about things she could do to help S enjoy the party. We arrived before the others and S was given a tour and shown a tent set up just for her if she needed it. S refused to join in with most party games, but N allocated her special jobs. S tended to stay away from the groups of children and sat alone in the kitchen for a lot of the time or disappeared upstairs. She did have a meltdown when she stepped into the garden as the other girls cheered and was startled tried to run away and tripped on the steps, other than that though it was a pleasant experience. On the way home S snapped and made rude remarks about 5 people so as soon as she got home I sent her to her hideout (pop up tent full of sensory toys, favourite books and soft toys) to calm down. She seemed happy to just retreat and be left alone so we allowed her to play on the computer before bed.
All of this helped to get myself into a better mindset, no longer doubting my concerns, for today's appointment at CAMHS (Child and adolescent mental health service). Given that we felt so let down by our paed I was very unsure what to expect so went with no expectations. We had sent in a copy of paed's report with our notes highlighting our concerns and issues with what had been written. We had also brought with us S's kind hands book to show the proof that S does lash out at others, contrary to what the paed says. On arrival we were told the consultant was running late and later told she could be up to an hour late due to delays. We were happy to wait. My phone is armed with games and animated re-tellings of Dr Suess stories also having an empty waiting room to ourselves we got through the wait. When Dr C came to fetch us I liked her immediately. She spoke to S first and led us out to the room. I cannot explain why I like her but I just got a good vibe. We were lead into a room with 4 seats sat in a circle around a table some toys in the corner and at the back of the room a small office area. Dr C started to apologise about the wait, when she mentioned she had got caught in traffic in Leicester S started talking at her about there being a dinosaur museum there that she wanted to go to, and that she is going to a dinosaur park for her birthday then wandered off to look at the toys. Dr C informed us that it was only yesterday they received the paed's report which they have been waiting about 5 weeks for. She also told us that she had not yet looked at it as she felt it important to speak to us first to give us a fairer second opinion. We were asked about S. We went through the issues she has, her anxiety, her confidence issues, social issues, outbursts etc etc. The Dr seemed very interested in what we had to say and was taking lots of notes. During the meeting the Dr asked S who myself and her dad where and she said 'Mummy and Daddy.' The Dr then said 'Do you know their other name?' 'Yes this is Auntie Kirsty and Uncle Frank.' Later the Dr attempted to get our names again and S said 'Mummy and Daddy' and didn't see an issue with 'So can I call her Mummy then?' S looked at a few toys spinning the propellers on a helicopter, surprising me as she does not often get to into spinning things. She played with a doctor set for a while offering us all injections and stickers, then rammed a toy car into another toy, she later ventured to the office chair and started to spin on it. S span on the chair for the rest of the meeting, except the few times she came and threw herself over myself or her dad pushing on my throat, sensory seeking just as we had described earlier on in the meeting.
The Dr spoke of a group observation, where various professionals observed groups of children, not all being observed for ASD. She told us we may have travel within the county to a group but we said this was no problem. We were given a questionnaire for ourselves and the school to fill in. She was very apologetic that it may be repetitive of one we have done before. However on seeing it she had no worries. The form is all tick and 'on a scale' type questions. It is clear they are far more geared up to diagnosing ASD than general questionnaire. Inside there is a questionnaire titled 'Garnett and Attwood rating Scale'. Finally they are asking the right questions arranging to see her in environment that may show her true issues.
Unfortunately the meeting and taking S out of her normal school routine came at a cost and she was very misbehaved n school the rest of the day, rolling around on the floor and putting beads in her mouth. At home she was very excitable and I haven't dared take my eyes off her. Luckily Thomas and the magic Railroad (oh how I hate that film) came to the rescue again! It appears chewing is becoming a new sensory preference so may have to look into things she can safely chew on. I'm none to keen on her choices, being sleeves and foam bath letters. Despite a trying afternoon she fell to sleep within an hour and I am tonight feeling optimistic.
This glimmer of hope has changed my mind about what I am fighting for. I am not fighting to show the world my daughter has negatives. I am fighting to show the world just how well I know my daughter. Better than anyone!
