These boots.

In which my belief that the right footwear is the answer to everything is challenged.

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Previously gentle reader, you left us on the wrong side of a two way mirror, enjoying all the benefits of early intervention.

All parents of  children with additional needs will know about time management. As well as the Child Development centre, we were fielding dozens of other appointments, sometimes on the same week, by a range of services, apparently unable to communicate with each other. Over and over again, the exact same questions. Not irritating at all. As I wanted to help the youngest, and as I had been The Professional on the other side of the clip board just a few months previously, I complied with all of them.

Have you ever read The Special Parents Handbook? Go and buy a copy now. Yvonne Newbold points out that the people sending the appointment are Public Servants. We are the public. They work for us. We can choose which appointments are beneficial, change times and ensure we don’t become overwhelmed.(Two appointments in one week may be doable, two in one day. No. Just no).

The latest appointment involved feet.I love boots and am a firm believer that with the right footwear anything is possible.The Physiotherapist must have been of the same mind as she gave Pearl a pair of the sweetest little white boots with pink laces. (A school mum thought they were designer) They were Piedro boots, and as well as being cute enabled Pearl to pull herself to standing. The appointment,and the department that gave us these beauties, has proved to be the bane of my life.

It started well. A fabulous, kind and experienced man, who turned out to be an Orthotist measured Pearl, looked at her gait, and discussed planning forward with her Physio. The boots arrived. They worked. In my mind now, Orthotics was a department that believed in multidisciplinary working, was patient centred and provided killer footwear. How little I knew.

At this point, as I have found so often,there was very little explanation of the service,what it was for and what else it provided. Every eight weeks or so, we were called in, measured, and new shoes were ordered. They were different colours! They were cute! We had choice! I loved it.

Half a dozen pairs of shoes in, Orthotist and Physio exchanged glances and said Pearl would benefit from  splints. For some reason, I assumed these would give extra support, help Pearl learn to walk and then be discarded. Taking Forrest Gump as my reference (Run Pearlie, run ) I imagined one day soon she’d walk out of them and into pair of ordinary shoes. (Insert hollow laugh here)

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For the uninitiated here follows a description of fitting a child with Learning Difficulties for AFOs (splints).

Mother enters Stage Left with child in buggy. Child is interested and curious, she knows the staff and the room has toys in. She wants to crawl around and explore. A new Physio enters Stage Right. The Orthotist bends the child’s wonky foot into a right angle with her ankle. The child is not keen on this turn of events.The new Physio waves toys and books in front of child. The child is unimpressed, but happier when the Orthotist releases her foot. Unfortunately he then returns with a metal bar and wet bandages for casting. Holding her foot at the correct angle, he skilfully wraps her foot below the knee.Mother is fascinated, child less so. As the plaster sets she begins to scream,the Physio waves a book,Mother sings  Twinkle twinkle little star (!?!) with a rising tone of panic. Orthotist cuts off  set cast (more screaming, more singing) and releases the little foot.Child is now crying real fat tears, and buggy, child and mother are covered in Plaster of Paris,as is most of the room.

I would love to say that being cast for splints gets easier with familiarity. I would love to say that.

Let’s go back to the first splint experience. Following Pearl shedding enough tears to wash the Plaster right back to Paris, we got to choose a pattern for the splints.This was more like it.  Design is much more my kind of thing.

Two weeks later we return.The lovely, experienced Orthotist is poorly and someone is covering.This someone doesn’t like me and has decided  I am a flippant idiot. He is very serious. I am very nervous. He shows me how to put on the splint, and tells me to try. I am shaking slightly. He raises his voice.

“No, no,no not like that”

I am a Professional woman, a mother of three in her late thirties. I am not used to being told off like a naughty child.It makes me shake more. I can’t get the damn thing on her foot. Once it is on and I have been suitably humiliated, I am told that I will have to go and buy shoes to go over the splint. Pearl only has one splint,but she can’t weight bear in it without shoes.

I enter Clarks (other shoe shops are available) I am by now in a bit of a state.I take my ticket and wait my turn.The assistant comes to measure Pearl. I explain.The woman looks at Pearl, and  is afraid. She a grown woman is afraid of my non toddling, toddler and her splint.

“I think you will have to make an appointment and come back”

Suddenly shaken back by her reaction into a state of near aggressive assertiveness, I refind my voice .

“Look I am finding this very difficult and I am very upset.She needs shoes, you fit shoes and we will work out together how to do this.The clinic is local and she is not going to be the only child who comes in here needing splints”

Wisely the woman gets a general grip and helps. We have to buy two pairs of shoes-TWO PAIRS, because now Pearl has two different sized feet.It’s alright according to the shop,as they will give us a discount which means that the pair will ONLY come to Β£50.

So my lovelies what can we learn from this experience?

Mothers and Others

Carry tissues.

Wear waterproof mascara.

 Professionals

Support parents when medical equipment that visibly separates their child from their cohort is required. It may be clever scientifically, it may be part of your working life, but the fact it has a pretty pattern on it does not make it easier.

Start working on training local shoe fitters.

Advise parents on the right style of shoe to go over splints.

Tell them the why.“We are fitting splints in order to enable her to have a straight foot and a flat base for standing.They are also needed to ensure her foot does not become twisted as it grows and to encourage a good muscle stretch”

Tell them the when.”she will need refitting as she grows and may need to wear them for extra support all her adult life, we will keep reviewing and keep you informed”

Tell them the how.”When she needs new splints speak to her physio”or “we will review in 8 weeks”or “here is our number phone when she needs an appointment”

Keep your interpersonal skills honed.

Oh (and a personal bugbear) link up with a medical charity working in developing countries so that splints,shoes and gaiters that are often barely worn can be reused and not go to landfill.

Thank you.

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Author: pearliejqueen

Mother of Pearl and two others.Reluctant specialist in special needs parenting.Champion procrastinator,and escaper to the world of Vintage.

12 thoughts on “These boots.”

  1. LOVE this post. Thank you for sharing. Almost mirrors our experiences *sigh*
    Totally jealous re: Piedro boot colours…as I recall, we got a choice of black, black or…erm…black. And whilst the grip on the sole is almost worn out now, we’ll have to wait until next year to be considered for another pair. Although if the splints are tolerated at some point in the future (we’re not doing very well with them), Hannah won’t get any more. *sighs again*

    Liked by 1 person

    1. I hate it that so many of us have had the same experience 😞Pearl has two splints now and tolerates them well generally,but I’ve just had another awful appointment (another blog post !!)which reminded me it’s always been an issue

      Liked by 1 person

      1. How very Cheshire indeed, madam! Actually, Hannah did have red boots…but not Piedro’s…the significantly cheaper alternatives, until someone finally realised she needed the proper ones. Almost tempted to move to Cheshire now πŸ™‚

        Liked by 1 person

  2. Oh, I so empathise. I have had similar issues wtih orthotics and my special needs daughter. Getting her foot measured can be challenging, let alone getting her gait assessed is challenging. Good on you for keeping it together in the shoe shop and pushing through. Thank you for sharing. All the best.

    Liked by 1 person

    1. Thankyou-this was 7 years ago and it’s still a nightmare-a whole afternoons gait analysis 2 1/2 hours away is the next hurdle,and I’ve been told they can get a bit short with children who don’t cooperate…may start taking the tablets now!!!!

      Like

  3. So feel your pain. We have been on that exact journey. Wear the afo’s bought the t-shirt. We now get hand made shoes done (at not staggering expense) at Chuckles shoes in Exeter. All made by shoe elves that live in a basement.

    Like

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