Saturday, 25 January 2014

The talking point this week is working mums, but what about the dads?

I posted earlier this week about a mum of a child with additional needs being interviewed on Radio 4's 'Woman's Hour'. Well, being a working mum, I missed it but looked on the BBC iPlayer and discovered that the programme actually featured a working mum on the Tuesday and Wednesday shows as well. So I listened to all three:

On Monday Hannah talked about her daughter Rosie who has autism and how she had to start her own business Rosie and Bo because she could not find an employer to accommodate the flexible working she needed. On Tuesday Gill explained how she set up the Pulp Friction Smoothie Bar with her daughter Jess, who has Downs Syndrome, to give her work experience. Finally, on Wednesday, Linda talked about her experiences, having a celebrated paralympic athlete for a son and her work at the Papworth Trust. In addition Chris who has cerebral palsy talked about being given the opportunity to go to college and become independent. I heartily recommend you listen for yourselves; it's not often we get to hear our experiences in the mainstream media. Two quotes stand out for me: that employment and disabled children are like oil and water. The other was a comment about how charities tend to promote images that engender sympathy in order to fundraise but that we don't want sympathy for our child or for ourselves.

If you go to the Woman's Hour website you can select the episodes in turn. I got confused by the description of the show because it doesn't mention anything about special needs but you just have to select 20th, 21st and 22nd then trust me the interviews are part of the show.

For myself, I work 26 hours a week. 3 days I'm in the office which is an hours drive from home. Then I work 2 mornings from home. I can do this because I have a job that I can do from home but more importantly because I have an employer that has tried to accommodate my needs every since I came back from maternity leave. They have been incredible and I know just how lucky I am. I can also do this because I have very supportive parents who look after Seth 3 days a week after school. The level of support I get is not the typical situation for any parent, let alone a parent of a child with additional needs.

The main difficulty is the distance from home. When Seth threw himself backwards at school, slamming his head and ending up in hospital I was over an hour away from him. Craig works just 15 minutes from home and school but finds it difficult getting the time off. Being closer it would make more sense for him to take more appointments, and be able to be more involved. However, his employer seems to have no understanding of the impact of having a child with additional needs has on him and whilst my job actually gives me some respite from being a carer Craig is now off with depression due to the stress of trying to juggle both roles. Is the only solution for one parent to give up work entirely and take the 'carer' role and the other to just bring in the money? A 'standard' modern family can expect to make a choice about this. But in our cases, unless you are very lucky, its pretty much enforced. Even with Seth being as healthy as he is the number of appointments we still attend is very awkward to juggle even with the understanding employer, and manager, that I've got.

Going back to Hannah from the interview on Monday, she also has a guest post on Special Needs Jungle in which she continues on the subject of working and how the tendency is for the mum to become the stay at home parent/carer and the dad has to work, often long hours. Whilst I applaud the subject of working mums, whose going to interview the dads?

Thursday, 23 January 2014

You mean shopping with a disabled child doesn't have to be a nightmare?!

I've just read a post from one of my favourite blogs 'Love That Max' written by Max's mum, Ellen.

The post shares the story of a mum in Winsconsin who wrote to her local stores telling them how difficult it was to shop with her one and a half year old son who has cerebal palsy and asked if they could purchase a Carolines Cart which is an adapted shopping trolley developed by another ingenious mum of a child with additional needs. The cart costs just $850 (about £515) . Within a week one store had simply bought one. Talk about ensuring customer loyalty! You can read the whole post here.

Well I think we should take a lesson from Sandy and so here's my open letter to Tesco, Sainsburys, Morrisons and ASDA (feel free to copy):

"Dear Sir/Madam

My son (Seth) is 6 years old and is physically disabled. He has needed to use supportive seating from birth and so was never able to use the child seats you fit onto your shopping trollies. Shopping became extremely difficult as I have to push him in his wheelchair with one hand and pull the trolley with the other. I tried using the wheelchair adapted trolleys but they are designed for adults in wheelchairs and don't fit.

Yes, I could get my shopping delivered but my son actually loves shopping; the bright lights, the food smells and especially the checkout beeps. Plus, as a parent of a child with additional needs I can sometimes feel isolated enough without another reason to keep me indoors. I have also tried asking for assistance with my shopping but I'm uncomfortable having a stranger trailing around after me.

The reason for this letter is to ask if you could provide adaptive seating in your shopping trolleys. One has been developed called the GoTo Seat. It fits into your existing shopping trolley child seat offering that vital extra support for disabled children. This only goes up to 2yrs old, however, so maybe you could provide some R&D support to produce your own adapted trolleys like Carolines Cart?

Yours faithfully

Jo Cousins (Ms)"

Friday, 17 January 2014

BBC Womans Hour talking about going back to work after have a special needs child

As the majority of commenting happens on Facebook I have added in a Facebook comments box so that these comments will now show on this blog as well.

You can still use the old comments box but you now have the alternative option to 'like' or comment on a post and automatically share your comment in Facebook. So, can we try this out please and add any likes or comments here instead of in Facebook. Should be easy peasy and means (assuming I've done it right of course!!)

To give you something to talk about (!) BBC Womans Hour has Hannah from on next Monday to talk about her experiences going back to work after having a child with additional needs. is an online shop which has some nice stuff; clothes, toys  and things like weighted blankets (following a theme from previous posts). I'm always inspired by anybody, especially a parent of a special need child, who sets up their own business so I'll be listening in.

Saturday, 11 January 2014

SWAN kids

This little girl is undiagnosed and her grandmother has a blog that I've just come across.

Friday, 10 January 2014

Hand made weighted quilts and supportive seating on the go

I posted a while ago about a lady I had met who was begun making weighted quilts. I had lost her card so couldn't share her contact details but I have now found it again!

Weighted blankets have been found to help children with sensory input disorders, particularly children with autism. Something about the evenly distributed weight calms them down and often helps them to sleep. Anyway, Janette makes beautiful quilts and these weighted quilts are intricately made. I'm thinking about getting one for Seth. It might not be an appropriate solution for your child and the weights can make it an expensive experiment but last time I spoke to Janette she was looking into payment options so that you if it doesn't work out she'll take it back and refund you some of the cost. You'd need to contact her directly to ask exactly the details but her email address is and I know she plans to have a website soon.

Speaking of useful kit, I got very excited about a new innovation created by Leckey and Cerebra. It's part of a new Firefly range and it's called the GoTo Seat. This seat is completely portable and can be attached to supermarket trolley seats, dining chairs, swings etc etc and it provides postural support. Where has this been all my life?! I hear you cry. And that's when I stopped being all excited. Because Seth is too big for it. Size 1 is only available at the moment and is for children 1-2 years and Size 2 which will be available soon is for up to 5 yrs old. So whilst I'm gutted for me it's still a brilliant invention and will make an massive difference to parents' lives.

Friday, 3 January 2014

My new crazy project; setting up a play centre for special needs kids

I've been distracted from my blog recently. I've got it into my head that I can set up a play centre for our kids with additional needs. It's utterly ridiculous, of course. I have no start up cash, would need to fundraise an utterly enormous amount of money and then would need to make it a financially self-sustaining concern.

And yet others have managed it. So why not? Would it not be better to fail at trying something amazing than convincing yourself there is no point even trying. And maybe not failing at all! So, I've been reading about setting up a charity and trying to understand what difference being a social enterprise would be. And looking into Crowd Funding. I've even chosen a name (Giggles Play) and set up a Facebook page to get people talking about it.

I get so frustrated having nowhere to take Seth where he can simply chill out and enjoy. Especially when the weather is rubbish and so going out for a walk is out of the question. We've got really cool people in our little community with similar goals so hopefully between us we can create something that our kids deserve.

So, if you are a parent, carer, special needs professional, someone who has experience of setting up a charity, social enterprise or crowd funding; I need to hear from you! I'll take any and all advice. And if you know someone, please share the facebook page (or twitter account @giggles_play) with them.

Oh and if you know anyone in a legal firm I could really do with some pro bono legal advice!