Which leads me neatly back to ADD-vance, which has become a powerful community for SEN Mums in Hertfordshire, all thanks to one Mum who didn't want anyone to be as alone or unsupported as she was when her son was diagnosed. (That's Anne Ross, who still runs ADD-vance, 21 years on, and who deserves every medal going.) Before this blog ends, I want to mention the key ways in which you can access The ADD-vance ADHD and Autism Trust, and make the most of this wonderful community.
The first step is to visit the website: www.add-vance.org There you will find information about all the services offered by ADD-vance and a series of links to other resources. It's definitely worth exploring the website, as there are so many services that I will almost certainly fail to mention some here!
Through the website, you can become a member. This is free, and means you get all the information about upcoming courses and events as soon as it becomes available. The courses tend to book up pretty much instantly, so membership is a no-brainer if you want to take full advantage of what ADD-vance has to offer. It also helps the Charity to track the extraordinary number of families who are looking for support in Hertfordshire, which I am sure is important in the never-ending process of applying for grants to keep their services going. I'm looking at the mobile version of the website as I type this post, and the 'Become A Member Today' link is found via 'About Us', then 'Overview', at the bottom of the page.
Next, I would strongly recommend that you join at least one of the ADD-vance Facebook Groups, which you can also find via the website. There is a public charity page, where you can see news of events, training, services and so on. There is also a closed group, which is pretty much the basis of my remaining grasp on sanity. This is a safe place to ask for advice, to celebrate victories small or large, to vent or just to share whatever SEN-related thoughts are on your mind. ADD-vance hasn't been on facebook for very long, but I can't imagine trying to navigate the challenges of daily life or of SEN support in Herts without this amazing resource. If one or more of your family members has ADHD, ASD or related conditions - with or without official diagnosis - you need to join this group. Really. I promise. The other group I haven't mentioned, because I'm a Mum of boys, is Spectrum Girls, which now runs under the umbrella of ADD-vance, and has a facebook group. To quote from the website, 'Spectrum Girls is a group aimed at supporting females and families of girls affected with Autism or ADHD'. Knowing some of the members, I'm sure this is an equally supportive group, full of expertise, experience and a good dose of humour (and/or blitz spirit), and once more you can join their facebook group through the ADD-vance website.
ADD-vance also have a contact e-mail: email@example.com
In Real Life
If you are just getting ready to talk about life with SEN and have a burning question or two about Autism, ADHD or ADD-vance, the telephone helpdesk is a fantastic service. The helpdesk is open from 9am to 1pm, Monday to Friday, or you can leave a message. Now here's the good bit: the people who work for ADD-vance all have family members with Spectrum conditions or ADHD. They get it, and you can cry. Or rage at the system, then cry. I often wonder if anyone calls without crying, to be honest. I may have to call about something mundane next week, just to provide some non-weepy variety for the team. Seriously, though, you would struggle to shock these people, and they will do their utmost to help, or to point you in the direction of help. The number is 01727 833963.
If you can move heaven and earth sufficiently to leave your house without the children, there are monthly support group meetings in St Albans and Hertford. These are 'just turn up' sessions and the topics of conversation depend on the people attending and any burning issues in the room. It's an informal discussion, but facilitated by at least two fully trained members of the ADD-vance team, who have personal experience as well as all that training. And they're super-kind. And there's tea. Even if you turn up and sit in silence, you'll feel less isolated than you would at home. When I went to my first support group, I couldn't believe there were that many people in Hertfordshire affected by SEN. There were probably a dozen in the room, but it was early days for me and I had no idea that we actually number in the thousands! And as for the sitting in silence, I think you're probably more likely to feel instantly welcome and spill out every random thought and worry you've been storing up, and find that people get it. You can call the office for more details about times and venues. (Some people may even manage that without crying with relief. Could be an interesting experiment.)
And then for me there's the holy grail: courses for parents. The course I've written about in earlier posts is a free (yes, free) 6-week course called Time Out for ADHD & ASD. That doesn't mean it teaches you to do the Supernanny 'time out/naughty step' thing, by the way. On the contrary, it works on the basis that those techniques aren't going to work for our kids, and gives you alternatives! The 'Time Out' is time out for parents from the daily grind (or in my case, daily chaos), in order to reflect on life with SEN and ideas for managing it. Each of the weekly sessions is two hours long, and the topics covered depend a bit on who is attending and what they need, but a usual pattern might include introductions (where you can cry some more and give information that will help the facilitators work out priorities for the coming sessions); self-care; information about autism; information about ADHD and medications; diagnosis and the feelings that go with it; anxiety and self-esteem; behaviour and strategies to manage it; siblings; education. My course also had a useful bit on the financial side of being a SEN parent. I know many people who have attended these courses, and all have been profoundly affected by them. Apart from the course content, it's a way to meet other people in the same (potentially leaky, rudderless) boat. Several of the people from my course continued to meet for months after the last session, and a few of us are still good friends years on. (I also met someone who found me a cat to adopt, but I can't guarantee that will happen for all of you!) A key point: there are now also Dad-specific versions of the course, run in the evenings. My hunch is that it's similar, but with less weeping.
As time has gone by, ADD-vance has also developed more focused 2- or 4-hour workshops, on topics such as Understanding Autism; Understanding ADHD; Managing Anger and Anxiety; Understanding Sensory Needs; Autism in Girls; Writing Social Stories. Sometimes these are paid courses.
One note on the courses: they are so highly respected by local professionals, ranging from CAMHS to paediatric and OT teams, to name but a few, that often the first piece of advice after diagnosis is to attend an ADD-vance course. However, ADD-vance receives no central funding for the courses, and are constantly scrabbling for resources to make each new course happen. Demand is extremely high and every course is fully booked within days, if not hours, with waiting lists and many parents disappointed. If you have attended a course and valued it, please consider helping to fund a course for parents who are as desperate as you may once have been.
Next up, there is also training for professionals and practitioners, on both ADHD and ASD. My personal opinion is that while schools seem to be switched on to the need for ASD training, ADD-vance is the leading light in ADHD training in the local area. Ask your SENCO if staff have had training from ADD-vance. If they haven't, ask why. The ADD-vance trainers include ex-teachers, so they are ideally placed to carry out realistic and appropriate training in schools, and they can fit a great deal of training into an INSET Day or half-day. I believe that ADD-vance has also been involved with training for community groups and the police. (If that's wrong, please shout at me, ADD-vance people!) Some schools have group-funded training through local DSPLs (funding groups - a complicated system, but all schools are part of one), and some DSPLs also commission ADD-vance to provide parent or carer training.
Finally, ADD-vance offer 1:1 Coaching. Specialist ADHD/Austism coaches can work with you at home, over the phone or by Skype, to help you tackle the issues most relevant to your family. This is a paid service, although some families are able to access funding through other support organisations. I haven't had coaching, but know that it's highly recommended.
Other ways to be involved
You'll never see this advertised as an ADD-vance service, but getting involved in fundraising for ADD-vance is an incredibly rewarding activity. You can work with a group or go it alone, but you won't manage to avoid getting emotionally tied up in the Charity's activities, and feeling ever more part of the community. They need all the money they can get, so do get in touch if you want to help. I swear it benefits your own mental health at least as much as it benefits ADD-vance's coffers.
I also want to salute Anne Ross for seeing the importance of getting parents from SEN families back into work. It wasn't practical for me to return to work with three children under three who seemed to have particularly quirky and challenging behaviours - like, for example, being awake for about 20 hours a day. I can't begin to tell you how much of my self-esteem and identity I lost during the children's early years. I still haven't figured out how to carve a working life out of our chaos and I am far from unique. Anne spotted the need for parents - not me, but like me - to do something that would help them, as well as helping the families using ADD-vance's services. As a result, everyone who works at ADD-vance has personal experience of SEN. Anne has made it possible for them to find their way back into work, to gain new knowledge and skills through training, and to rebuild their confidence while helping others. I have watched a very good friend blossom since joining the ADD-vance training and coaching team, and it makes me happier than you can imagine to see her ever-growing confidence as she shares her hard-earned knowledge and experience with more and more lucky families. Thank you, Anne, for caring about your staff, and making them a family. They couldn't do such a wonderful job of looking after the rest of us if they weren't so fully supported by you.
I'm not quite done with my 90-day blog yet. There may be one or even two more posts. After that, I'm going to start a new blog about 'Mum-Care', which won't be tied to non-alcoholic madness or a period of 90 days! In the meantime, the fundraising page is still active, and everyone at ADD-vance would be very grateful if you could find a small amount (or large, if you so wish!) to donate: