Small Steps contacted me to say that they don’t have a place for May. They didn’t explain why or if a place might open up. They did invite us to another one-off session late in January. Does this mean we are still being considered? They did say “please rest assured that we are thinking of her.”
I’m not sure what “thinking” means. Is this a vague British-ism meaning “still considering her for a place”, or a vague British-ism for “we thought she was a very sweet child”?
I’m now in the strange situation that they may actually read my blog and see this, as they saw my original posting about them. So, if I can just add, I hope they don’t mind me quoting that tiny bit of a larger and very friendly email.
I could have asked them all the above personally rather than write it here. But, this post isn’t a plea for them to respond. Besides, they must have thought either 1) May wasn’t needy enough, 2) other children were more needy, or 3) there were not spaces available in the level class May requires.
Until I received the email, I don’t think I realized how much I’d pinned my hopes on a place. Sometimes May’s care, regardless of the professionalism of the experts, seems so haphazard. I see someone one week and then not again for three or four weeks. I do everything they ask, but do I do it effectively, long enough, frequently enough, in the correct alignment?
I never know. I can’t know. How can I keep track of everything? It is a lot of pressure to feel that I am by far the greatest influence over whether my daughter maximizes her potential.
Once a week, to surround myself with other mothers like myself, in that kind of instructive setting, would have done me as much good as May.
FFS!! I’m so angry that Small Steps said that … so vague and non specific! Is there an alternative? Can we start a campaign?!!
Love the blog, love you, love chubster
)
I really hope you’re able to get a place. Our move to a specialist EI Centre for CP was definitely a great move for us. However, having said that, we were on a waiting list for a year. BUT I was on the phone to them regularly just ‘reminding’ them about us in case a place came up
.
It’s a funny thing about blogging when you realise you could be addressing an audience directly! I hope they DO read your post and realise how important a place is for you. It’s sad to hear that there are waiting lists and lack of places in the UK in the same way there is here in Australia. In the meantime, I am sure you are doing lots of marvellous things with May that are going to make all the difference in the long run!
Dianne
Hi Stacie.
Read about your blog on Andrew Sutton’s “Conductive World” blog. Great blogging.
I’ve added a link to the parents’ blogs page of The Conductive Web (http://bit.ly/2FTwxj). Please take a look.
If I were you, I should write again. Don’t let up. Many long years ago that’s how we finally got our daughter Sarah into the Peto Institute. (She’s now 27!). Very best wishes.
Norman
http://bit.ly/5sNQt0
Hi Stacie, does your phone not work? As a parent of a child who lost half her brain at 19 months through a viral infection, whenever I get contacted by a charity / service / NHS that may be able to help my daughter and there is any ambiguity, I tend to give them a call for clarity. That way it avoids the needless hours spent agonising over what they meant, which can be better spent agonising over when I will next get a good night’s sleep instead of my child waking and fitting every few hours; or worrying about if she will be seen by a hospital department for new AFOs before her gait becomes worse.
Of course, I assume they wrote to you or left a voicemail, otherwise you would have raised your questions when they rang and undoubtedly got answers, albeit not necessarily the ones you wanted.
Ultimately, every charity has limited means at its’ disposal and so places are always at a premium – in my experience, the good ones have huge waiting lists but struggle to expand capacity because of lack of funds [Katie/commentator 1, if you are that bothered about the situation, how about doing some fund raising to help the charity expand or is that someone else's problem FFS?]. Many of these charities offer their services free to the children/family but are wholly reliant on the goodwill of volunteer fund raisers to allow them to remain open.
Sadly, if the charity does read your note, I suspect they will now be devastated that their wording caused you distress, which I doubt was their intention – even your own posts suggests they offer a great service. Importantly, I hope they remain true to their fair allocation of places to many who have perhaps been on the waiting list as long, with equally pressing needs, but who are less savvy about blogging to air their grievances – you know that you would hate it if someone else jumped the queue via their connections or similar means to May’s detriment.
I hate to sound so unsympathetic, but having lived with similar challenges to yourself for nearly 10 years I
- recognise the immensely valuable work these charities do and the huge commitment of their staff to improving our children’s lives
- have spent years battling with far less responsive health professionals and administration to get basic attention for my daughter
- now acknowledge there is no bottomless pit of resources and so blatantly encourage friends/colleagues to donate to the work of these charities in order that others can benefit from the valuable early intervention my own daughter enjoyed
- realise that you face a frustrating and tiring battle to get resources to help your own child, but that writing disparaging notes is not helping you [other than venting frustration] or May but could hurt the Charity and its’ ability to help other children who are equally deserving through the resultant bad press.
Meanwhile, as well as Small Steps, you may wish to try charities such as Brainwave, Three Wings Trust, Contact a Family and Scope. Collectively they offer a spectrum of support which you can dip into, waiting list permitting.
Feel free to contact me via email – I am always happy to help families in a similar predicament by sharing contacts/experiences etc. realising that it is a maze that is both daunting and frustrating to anyone, never mind to someone setting out on this lifetime journey of being a parent to a child with special needs with the immense emotional and physical challenges that brings.
Dear Stacie
I read your recent article in The Guardian and was so impressed by your positive attitude and energy, so I logged on to your blog to read more. But I was saddened to read your post about Small Steps.
I am a parent of an 11 year old boy, who has cerebral palsy, epilepsy, hydrocephalus and is severely physically disabled and has learning difficulties. When he was just over a year old we were fortunate enough to find Small Steps and attended sessions there for nearly 2 years.
In my experience you will not find a service, or team of people, more dedicated to their work in helping parents, like ourselves, and our children. Small Steps is a charity, they receive no statutory funding and are limited by the space they have and the funds available to them. They cover a large catchment area and unfortunately have a large waiting list of families who want to access their service.
If you have been invited to a couple of sessions (whilst you are waiting for a permanent place), then you are already in the system and it’s only a matter of time until they find you an appropriate place for your daughter. My advice to you is to be patient, keep in touch with Small Steps, and try not to be too angry towards, or disparaging about a service that could, in the end become one of the most important places to you and May in her early years… Small Steps was certainly that for me and my son.
You are at the beginning of what will be a long and sometimes difficult journey with your daughter, but you’re not the only one… there are good people and organisations out there to help you… it really doesn’t have to be a fight.
Ruth
* You might find it helpful to have a look at the Contact a Family website: http://www.cafamily.org.uk . They provide advice, information and support to the parents of all disabled children.