Our quest for ADHD assessment continues

You may have read my previous post about the ridiculousness of getting to this point. Once the GP had sent the referral, I received a letter back which basically asked for me to justify why I felt assessment was necessary, and questioning whether I had really done everything I could to help support my child or was I just a lazy parent looking for excuses. On the letter, it said call us to discuss further. So I called them, and spent 10 minutes on the phone with a lady telling her all about the SENCO reports from school, the diagnosis of autism in December 2015, my attendance of a Solihull Positive Parenting group and subsequent pass of the course in July 2016, the amount of extra people that had observed Picklepot in class and the reports they’d written about him, all of which said that his behaviour pointed to ADHD as a co-morbid condition alongside his autism.

After 10 minutes, the lady on the phone said that all sounded fine, and please could I put it all in writing for them to look through and come to a decision. I asked why I had been instructed by the letter to phone, and she basically said it was to wheedle out those parents who are lazy and looking for excuses, as they rarely make the effort to phone. She provided me with an email address, so that night I sat down and wrote everything down in an email to send to them.

A few days after that, I received a thick envelope in the post. In it were two huge questionnaires for me to complete, and two huge questionnaires for the school to complete. I took the one for school in the next morning for Miss B and sat down that evening myself to go through the parents one. It took ages. There were loads of questions about behaviour, home life, school abilities, even asking about the type of delivery I’d had with Picklepot when he’d been born and whether there had been any issues during pregnancy or delivery. I’m not sure about the relevance of that but they apparently feel it has a bearing on things so I answered every question.

I posted back the forms a couple of days later, as despite their slowness to act upon any information it was made quite clear with the included letter that if you failed to get the forms back within 2 weeks of them being sent out then it would be presumed you no longer needed assistance and the whole process would need to be started again with GP referral. I’ve still not heard back from them, but it’s only been 2 weeks since I posted the forms back (1^st class Royal Mail, sent direct from the post office to ensure no reason for it to claim to be lost in the post or delayed). I hope I hear from them soon though as things have got no better for Picklepot. He’s still highly emotional, bursting into tears or becoming very angry within a split second and raging with temper, throwing things, screaming, slamming doors, growling and being altogether a very unpredictable ball of emotion. One thing I discussed with Mrs D, the SENCO at school, was that potentially we could be heading for early onset of puberty, given that he is going to be 7 in August and is already wearing age 9-10 clothes he is very tall and she said its perfectly possible this may happen and the onset of hormones could be a reason for him being so emotional. Again though, it’s something the medical ‘experts’ need to be involved in with helping us out here, and helping Picklepot find a solution.

I’m hoping that the additional visual aids I’ve got him (the wristband and the communication flash cards) will help as it means he doesn’t have to verbalise when he’s becoming overwhelmed, but at the same time it would be helpful to be able to stop him becoming so overwhelmed so often. I feel I am constantly on his case asking him to correct behaviour, always telling him to stop that, come here, do as he is asked, don’t throw things, don’t scream in my face, don’t hit, and its tiring for everyone involved as well as repetitive.

It was a relief to go to our ASD Helping Hands group yesterday and be able to chat to some of the other mums there who are facing similar situations with their kids, and know that I could be honest and say how I felt and they understand, they don’t judge. Likewise, I don’t constantly have to be trying to keep Picklepot from behaving in ways other people see as unusual or disruptive because all of us are there for our kids who are on the spectrum so our normal is normal to them, too, and nobody looks at him differently or thinks he is being odd or tells him he is weird, so he can just get on and be himself and it’s all good. I’m so thankful for our little group, and for the friends I’ve made there.

Today we’re having a quiet day at home. Daddy P is at work, so the boys and I are chilling in our PJs. I’ve done loads of work, I’ve been running the washing machine, tumble drier and dishwasher since first thing this morning and I’ve been drinking lots of yummy coffee and doing some online shopping. In a little while I’ll go and start cooking our chicken for dinner but for now my Sunshineface has just woken from his nap so it’s time to go upstairs and sort him out and then we can do some tidying upstairs.

Here We Go Again ... The Hunt For Diagnosis

We went for the doctor’s appointment on Wednesday morning last week to get the ball rolling with the ADHD diagnosis for Picklepot.

Our appointment was at 9.20am so we walked to the doctors after morning registration at school (So Picklepot’s attendance record wouldn’t be affected by missing morning register) and we arrived at the surgery at 9.10am. I had both boys with me. Sunshineface had a bad night so I was exhausted and he hadn’t woken up til late, so he’d woken up and had a nappy change, got dressed and got straight in the pushchair.

The doctors surgery seemed quiet, and when I booked in on the computer screen it showed a 12 minute waiting time. Considering we were 10 minutes early for our appointment, I thought that was fair enough. However the minutes ticked by and it became apparent that the 12 minute waiting time was a gross underestimation.

By 9.45am Picklepot was spinning, flapping and squealing in the waiting room, bored of waiting. There are a few childrens books on a small table in the corner of the room, and the ones aimed at really young kids he’d read to Sunshineface, and the ones for older children had pages ripped out and drawn on which made him upset because someone had done this awful damage to a book so he didn’t want to look at them. He span and flapped and squealed some more. I asked him to come and do it near me and not on the other side of the waiting room just so he wasn’t in danger of accidentally tripping and falling on someone else, or hitting them with a flailing hand or foot. I didn’t try to stop the stimming. I knew it was important for him to release the energy he had inside him.

I’d already warned him that I would need to talk to the doctor about him. He said that was OK, because it was to get the doctor to do a referral to a specialist who could help us better understand why he finds it so difficult to sit and concentrate like the other kids do at school. We were called in to see the doctor just after 10am. By this point Picklepot was bouncing off the walls.

The doctor we saw is what I call an ‘old school’ doctor. He has a big ancient wooden desk in the middle of his office, and a huge wooden bookshelf to one side with copies of Grey’s Anatomy and similar; he has models of skeletal systems, a skull with labelled areas, coasters that look like scrabble letters with his initials. He also had a Care Bears beanbag which Picklepot made a bee line for (after dancing around the room nosing at everything and asking questions about it all).

I didn’t try to stop it. When you’re there to get your kid referred for an assessment like ADHD the best thing to do is let them bounce and twirl and talk at ninety miles an hour and fiddle with everything because it shows the doctor some of what you’re experiencing and why you’re asking for the referral. So I left Picklepot to it and spoke with the doctor, who was very much in agreement with me about the need for assessment as he agrees its pretty obvious Picklepot does have ADHD as well. We discussed the mess up with the CDC and all of that – and both of us said at the same time “It’s like they deliberately make it difficult in the hope you’ll give it up”. He wrote the referral as I sat there. He took the notes I’d made and read though the letter that Mrs D had given me. (He also made sure he found the copy of it on the system before allowing me to walk off with that copy again)

We were in there for maybe 10 minutes, but I felt it was a good appointment. He’s definitely on the same page as me. As I was preparing to leave, he said that parenting could be challenging at the best of times and parenting a child as full on as Picklepot is an even bigger challenge but what we must all remember is that the person facing the biggest challenges here is Picklepot himself, so it’s important we do all we can to get the right assessments and diagnosis so that he can benefit from the support available. He said if I don’t hear anything in 4 weeks about an appointment for assessment he wants me to contact him again.

Here we go again, we’re going on a diagnosis hunt, we’re off to find the next one, what a beautiful day, we’re not scared …