ASD Helping Hands Thetford Family Support Group Library Display Project

This week has seen the culmination of weeks of planning. Some time ago, I saw a post from our local library on their Facebook page, showing off their latest wall display in the children’s area – a local childminding group had created it, and not only did it showcase some of the kids artwork but it also was an excellent promotion of the childminder in the local area. The library had commented that they welcomed other local groups to contact them about using the space for their own display, and immediately I thought of our ASD Helping Hands group.

The ASD Helping Hands Family Support group has been invaluable to Picklepot and I since we started going in January 2016. For two hours every fortnight we meet at a local venue and there are arts and crafts activities, the chance for the kids to play together and enjoy themselves without worrying about being judged by their peers for their ‘different’ behaviour, a chance for adults to have a coffee (or tea!) and a chat about things, a place for us to discuss things, a place where we don’t have to worry about what anyone else thinks of us because all of us are in this together.

Since joining the group I have made friends who truly understand what it can be like. The group has changed, we moved venues at the beginning of this year and some people don’t come any more, other people have started coming … but on the whole we still feel like not enough people know about the group, not enough people know it’s there and it’s available. The idea is that this is a family support group, so all members of the family are welcome, and even if the person with ASD doesn’t want to come to the meeting, that’s OK, they don’t have to; the idea is that everyone feels welcome, nobody feels judged and the group is a place you can come and enjoy yourself.

With the idea of getting information about the group to more people who could benefit from it, I contacted the library and asked if our group could be considered to create a display. The library were quick to say yes, and the date was set that our display would be up ready for the week starting 11^th September. At our next meeting we discussed some ideas of what we could do, and we came up with our plan.

We drew around hands and cut them out, and everyone decorated some hands with colouring pencils. We found a foam tree with foam leaf-colours which we cut out hand shapes and on each one we wrote the name of the children in the group. I created a big poster for the centre of the display saying ASD Helping Hands.

One of the ladies who comes to group knows someone who works for the local free magazine, and she contacted them about the display – they said if we sent a high resolution photograph along with a small written piece to go along with the photograph, they would run it in the magazine as a local interest story, which again obviously promotes the group and tells even more people about it.

Yesterday, myself and one of the other mums (and her daughter) met at the library with our display in a carrier bag in pieces, armed only with a wall staple gun and our imaginations on how we were going to bring it altogether. We talked, we laughed, we worked it out, we planned, and we got the display up on the wall. It took us the best part of 2 hours, but it was time well spent and we are so pleased with our efforts when we were finished.

Today was our first Helping Hands meeting since before the summer holidays. Afterwards we all went to the library together, and one of the mums’ fathers met up with us with his fancy camera, and he took some photographs of the group in front of the display. We now need to choose which of the final two photographs we are going to send to the magazine along with the article.

I’m very proud to be part of our little group. There’s lots of stress and tears involved when you’re struggling to get where you need to for a family member with ASD, but our group has shown me there is lots of laughter and friendship along the way as well.

We Are Each Unique And Beautiful, Together We Are A Masterpiece

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.