Tag Archives: wheelchair services

The Love Bug

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10 is the magic number in Boo Land. We waiting 10 long months for specialist seating (his fabulous Bee chair) to give him the support he needs and to help prevent the onset of further physical problems. And then last week our 10 month long wait from joining the wheelchair services waiting list to getting an adapted buggy came to an end. I cried with joy, let me tell you.

Until I’d had Boo, I had no idea how much difference an adapted buggy might make to children with additional needs. A buggy is a buggy is a buggy, right?

Wrong.

In his old buggies (the big Maclaren travel system and then smaller Triumph) that once belonged to his sister, Boo travelled well for about 6 months (until he was 3 months corrected age). But then his posture started to look odd. As the weeks and months went by, he looked more and more like a sack of potatoes being grudgingly carted around.

He wasn’t comfy. Worse: he wasn’t supported. We thought of the buggy as a necessary evil: a way to get him from A and to B. Increasingly, though, it just started to look plain evil: something that was ironically preventing him from accessing the world around him (a buggy’s principal function) and contorting him in the process.

The Grumposaur said I was worrying unnecessarily. It was OK. The referral would come through soon. Four months later it did. We were initially told Boo, rather offhandedly before we went into the workshop that he was on the young side for an adapted buggy. And then they looked at him more closely, exchanged glances and said he urgently needed something better and that we should take him out in the Triumph as little as possible. We were advised the best buggy for Boo was the Ormesa Bug, which is made in Italy. They might have one in stock (although to quote ‘it’s hard to understand our stock list so I don’t know if we have one or not’ – they didn’t). But he would get one ordered very soon. But there was one more but. They had spent their money for the calendar year already. No orders could be made until January. This was October.

I looked into buying one ourselves. You won’t be surprised to know they are extremely expensive and before you know it, he’ll need the next size up. (The rainhood and canopy alone that we have had to buy as they are not funded costs hundreds on its own.) On top of the buggy cost we needed specialist inserts we were told would be nigh on impossible to get privately and we’d have to pick up all repair and servicing costs, too. We decided to wait for the money to become available. And for months, I barely went out at weekends. Family outings rarely happened. How much fun can you have if you think you are damaging one of your children?

Six months, two more appointments and a new budgetary year later and last week, we got the Bug.

It’s a big old beastie and the seat is heavy to lift and fold. But we all know big is beautiful and this buggy is just fabulous. The support it gives Boo’s trunk via thoracic supports, a pelvic strap, 4-point harness and a footplate is miraculous. He can sit totally upright.

I have been looking forward to this day for a long time. Knowing he is well supported when we go out and about is priceless and such a relief after months of worry. What I hadn’t anticipated was quite how happy it would make Boo. He’s always liked being outdoors, but now and for the first time since he was born he is actually properly integrated into the world outside our house. He tried to touch everything as I push him around our local park in the week. The wind, kids playing, leaves on the trees. I think he really saw the ducks in the pond for the first time. Every one of the many shrieks and giggles he made made me want to cry.

People told me an adapted buggy would change our lives. I wanted to believe them. And in less than a week, I can say it already has.

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Good News Fridays #43-45

Talk about playing catch up. Things have been absolutely relentless here in the past few weeks. We have had lots of appointments for Boo. The bad weather has caused traffic chaos on my route to work, which means my 75 minute each way commute two days a week has been taking 3 hours a trip. I have been working very late many nights as a consequence. I may have lost my sense of humour. I haven’t blogged as much as normal. None of this feels right. It certainly isn’t sustainable long term.

Time to breathe. Time to try to catch up with myself. Time for a belated three-for-the-price-of-one Good News Friday. Because there has been lots of good news amid the madness. And if I don’t write it down, you know what? I’ll forget it. So here are just a few of the better things that have happened in the last few weeks.

1) Equipment: I was amazed. I’ve blogged and tweeted about our difficulties with wheelchair services before. The service is terribly under-resourced and there are problems with communication within our PCT. There are also some personnel issues that means some patients and their parents are not treated as compassionately or even just as decently as they might be. I burst into tears after our previous appointment to get Boo assessed for an adapted buggy. I don’t think we were spoken to with dignity and I had our physio there to witness that. I went home. I cried a bit and waited for the next appointment, which was promised to take place within 6 weeks. We had already waited 8 months by that point, so what was another month and a half? Except it wasn’t, of course. It was another 3 months.

In the meantime, I was sent a customer service questionnaire. In some ways, I am sort-of OK with the idea that we are customers of the NHS. But my child is also a patient, and above all, he is a child. He certainly is not a ‘case’, a phrase which is often used to describe him and which makes me scream in anger and pain inside. In this particular instance, we can’t go elsewhere for the NHS’s products or for their advice. There is no market for us to trade in and find the best deals. The language of consumerism just isn’t right then, and often, in my experience, it gets in the way of patient care. I said as much as it related to Boo’s case (albeit anonymously) on the questionnaire form I was sent. I read it through the day after filling it in to make sure what I was saying was OK and not unfair. I sent it off. I think they worked out who it was from. Two days later our overdue appointment came through. People were nice to us. They treated Boo like a little boy, not a problem.

And here’s the news. An adapted buggy has been ordered! It may take a few months, and sourcing accessories is time-consuming and expensive (£400 for a rainhood!), but we are pleased and grateful. This will really improve his quality of life and ours as a family.

2) Speech and language: We are getting some new sounds here: ‘en’ and the odd ‘m, m, m, m. m’ are coming. I almost don’t dare hope that this means I may repeatedly hear ‘Mummy’ or ‘Momma’ one day. I can’t quite let myself believe what I think has actually happened already: that he has said ‘Mom’ a few times in the last few days. I’ll wait and see. Things come and go in Boo Land. When I’m sure though, you’ll hear about it, don’t worry about that.

3) One amazing sister: Before we left for our last speech and language appointment, Sissyboo asked me if Boo’s therapist was pleased with all the sounds her little brother was making. I didn’t know how much of the truth to tell her. I opted (as I normally do) for the truth carefully packaged. I told her that Boo was a bit shy and hadn’t shown off as much as he did at home, so it was hard for his therapist to see what we knew to be true. That Boo was trying hard to speak. Sissyboo looked puzzled and then ran off to find a piece of paper and a pencil. And then she wrote down every sound she has heard Boo make repeatedly, asking me to correct spellings where necessary. She folded it up and asked me to take it to the next SALT appointment as proof of her brother’s achievements. With misty eyes, I did. And his therapist copied it for her files. I haven’t seen that latest SALT report yet, but our physio has, and she said it was so much more positive than all that have gone before. I am so proud of Sissyboo, the best big sister and advocate Boo could have.

4) Running: My training is still not as frequent as I’d like, but I have managed 6 runs in the last three weeks. Only 3 miles at a time, but it’s a start. I will do that half marathon. I will get fit again. And in the process, I might just get that bit of headspace I so badly need and miss so much.

5) Blogging: Things have been quieter than I’d like on the blogging front, but I have had some lovely blog-related things happen. For example, I wrote my first ever guest post for my blogging and life heroine Jenny over at Edpsire about musical play a couple of weeks ago. If you haven’t read it, you can find it here, and I’d love to know what you think. It gives you quite a good window into play Boo style!

Also on the blogging front, I was thrilled to be featured on Vevivos’s Newbie Showcase last week and want to thank all the lovely folks who visited the blog and started to follow me because of it.

And finally, I had a phone conversation with the simply fabulous Kylie of Not Even a Bag of Sugar. It was like talking to an old friend, even though she didn’t know my family’s real names! And I hope it’s the first of many conversations. The very best part of blogging is connecting with other people. And I am fortunate enough to have met (if only virtually) some amazing individuals over the past 10 months.

OK, now over to you. I hope you have some good news you’d like to share below in the comments box. I love to hear from you.