My child has a hidden disability, what's your excuse?

My daughters and I can often be found food shopping or walking through the local market towns browsing the shops for a little treat. We love getting out and exploring, but sometimes my four year old gets tired and wants to be carried, so we have a buggy for just in case. Sometimes my six year old gets tired and wants to be carried too. Not a problem, we have a buggy major for her, but I can't push two buggies, and my eldest is now too big for a double buggy so my youngest travels on the foot rest of the buggy major, or they share the seat of they are feeling kind enough. For me this is not an issue. I'm happy to do this so my back doesn't hurt from piggy backing one and pushing another...


We are also entitled to a blue badge (currently disputing our lack of replacement but hey ho) and we always use it if the car park is a distance from the shops or if we intend to do lots of walking whilst out.


I am happy that my child is entitled to these services, so we use them as she needs them, which isn't always but its more often than not required.


So when I meet someone on the street who tuts at me for allowing my nearly seven year old to sit in a buggy, our who shouts abuse at me when I park in a disabled bay and exit my car with a perfectly healthy looking family, I always ask one question... What do you think you know about this situation?


Recently I exited a disabled toilet with my two girls to be confronted by a disgruntled elderly lady. "There are toilets in there and baby changing in there. Genuinely disabled people would like to use these facilities" the lady said as she barged her way past my girls nearly knocking my daughter over.
"excuse me" was my reply
"you have no manors, why should I?" I was aghast at the lady who was quite obviously a miserable person today.
"we rightly used that toilet as my daughter has cerebral palsy so needs the rails to steady herself when sitting"
"no she doesn't she looks fine"
I was nervous but said what I thought anyway "you looked pleasant, but looks can be deceiving" grabbing my girls I walked away before I lost my temper.


I always encourage others to be the bigger person, but do you know what... People need educating!
 Not all disabled people fit into societies stereotypes, my child isn't in a wheelchair for example... Why do people need to be so rude when all they need to do is ask a question "did you know that was a disabled facility?" would have suffice and I would have politely explained the situation to the lady.


At what point did we become so disbelieving in this country? If we cant see it it is obviously not there... Well that simply isn't the case for many disabled people or those with additional needs.


So what is your excuse? Ignorance is not bliss in this case, it is simply rude, upsetting, and quite frankly downright disgusting. To think ill of a situation without fully understanding the facts is just not acceptable anymore. The sooner society understands that the better!

Doing it for ourselves... Is a professional essential to meeting needs?

So last week I took my two girls swimming and I had a really good physiotherapy session with my eldest in the warm water. And i started to think. We don't see our physiotherapist very often, in the past this has concerned me, but there are some very good reasons for this.

1.) our physio can offer us a limited pool of information to work with, ie my daughters needs haven't changed alot over seven years so neither has her physio programme. It is as essential today as it was when she was six months old.

2.) we don't have many questions, but when we do we call our physio to clarify. This reduces the number of visits as we will discuss the matters arising as they arise rather than build them to a point where we need a one hour slot to fit it all in.

3.) our community physio team are under resourced and over stretched so they can't come weekly to deliver physio. They can offer support, advice, and delivery of care where it is essential but that's about it as they don't have enough hours in the day to do more.

4.) our physio trusts and believes that we as parents can be left in command of our daughters programme, we can deliver and meet her care needs as well as any professional, which fills me with pride as there are many parents that wouldn't have the confidence to do this alone as we have done.

This got me thinking, does it really matter that we don't see our physio as frequently as we would like if the visits we do get are good enough quality and empowering enough that we can continue to deliver what our daughter needs?

If services were better able to recognise the families that can be empowered to self serve, and were able to train parents to deliver the appropriate care, we could keep more families on the books with less intense programmes being delivered directly by parents with support from the professionals. This would free up the professionals time to support families that have greater need for the professionals hands on delivery, it would also mean fewer families having to be discharged and re referred so often due to the fluctuating needs of their child or young person. This would reduce the stress on all involved in the long term.


So do service cuts matter?
well yes they do, we still need the service to operate, we still need the resources and the staff to deliver the work. But what we don't need is to be stuck in a system that discharges you because you don't need the intensity of care that others do. My daughter still needs her physio, orthotics, optometry, occupational therapy etc but she doesn't need to have it delivered directly by the therapists weekly. Services need to change tactics. Instead of cutting funding, be more imaginative and creative with the delivery. Empower families to deliver some of the therapy more effectively at home, bridging the gap when the specialists cant visit every two months.


Often parents tell me that their child only gets four hours of speech and language therapy a month. I always ask how true that statement is. Does your child stop talking when there's no therapist around? Do you not continue with the activities you salt practitioner has offered you? Does your school not continue to work towards that target area?
Answered no... So your young person gets far more than four hours of speech and language a month, it's just not delivered by the salt practitioner.


I understand that cuts are never good news, and that funding is always required, and that professionals are essential. But can we not be more empowered, can we not be more resilient? Is a professional essential to the daily delivery of all our Childs needs?
Sometimes yes, and sometimes no.


I urge you to think about it...