So tell me what is it you do?…

I am now a full time carer and Mummy to my special little Monkey Isabella, but I am a Primary School Teacher by trade. What ever job I under took from being a Travel agent, a Holiday Representative to a Holiday Entertainer I took seriously and would make sure I did my upmost to give the best possible service. I guess that’s why some of the professionals we encounter seem to disappoint me, I have extremely high standards.

When I was a Travel Agent I would treat every customer and holiday enquiry like they were the first of the day. I would listen and make sure I found the best holiday to suit their needs. It didn’t stop there however, I would try and remember their names when they came in to make payments and even if I was overworked (it wasn’t for them to know) I would always smile and give great service. When the shop closed at 5pm I wouldn’t leave until all the customers I promised to call back had been. Even when I got home I would watch holiday shows and programmes to build up my knowledge. I even dragged my husband around different hotels when we were on our own holiday, so I could go back and tell customers of my first hand knowledge! Doing the best and going the extra mile is something that has been enstilled in me from when I was little. I was never trying to out do anybody I just want to give the service that I would expect to be given.

The same can be said for when I was teaching. I know society think teachers are overpaid, have it easy and get loads of holidays, believe you me we earn and deserve those holidays. Contrary to popular belief we don’t stop working the minute the bell rings at three. I, like thousands of teachers do, didn’t leave school until 5.30 and then took work home with me, I would work weekends and at times until the early hours of the morning! I am not telling you this to brag, I am telling you this to make you understand that I loved my job and wanted to make sure that I was doing the best for my pupils and my school.

Which leads me to the point of my blog. After Isabella had been seen by the Paediatrician in March 2010, the ball began moving very slowly. Intially we were introduced to Isabella’s Physio, but the waiting list for the Occupational Therapist was a long one. We were desperate to meet her, as we had a list of questions we wanted answering. We finally got to meet her in the August, sadly I was disillusioned. The questions I had for her she wasn’t able to answer. I had asked her if she could recommend a baby sling, a bike seat, high chair and a buggy that would support Izzy, as at 18 months she was unable to sit unaided and had a weak trunk. (which hasn’t changed to date) She said she couldn’t and that these were questions she had never been asked. I was shocked by this, but to be fair to her she did say she would find out, but boy did she make us wait. She finally got back to me the following month and said that there were no special needs slings and she had requested a Bee Chair fitting.  We were however entitled to a special needs buggy.. Great we thought, but what an absolute shambles the process turned out to be! The Wheelchair Enablement Centre had apparently lost Isabella’s referral and the OT asked me to chase it! I have no problem with doing things for Isabella but I didn’t understand why it was up to me !? Needless to say I did and at the end of October we finally got an appointment to see a supposed ‘specialist’, who would assess Isabella and arrange a buggy for her to suit her needs. Our OT had been speaking to the centre and was recommended the Phoenix buggy, as it would give Isabella the support she needed.

The appointment was on Friday morning, so it meant Isabella missed her ‘Sing & Sign’ class. After a dreadful drive through traffic in Oxford and a parking nightmare with Isabella screaming throughout, we finally arrived at the clinic. Feeling stressed and having doubts (as one of my friends had already seen someone and said they would rude and unhelpful ) we took our seat and waited patiently. On cue Isabella decided to fill her nappy at the time we were due to go in. Typically the toilet was difficult and the door kept opening whilst I was struggling changing Izzy’s nappy on the floor, as there was no change table! What I haven’t mentioned was the toilet faced the waiting area! I came out red faced and flushed and found the Wheelchair service advisor looking for me.

She led me through to her office and asked me what I was here for!? I could feel the veins in my head begin to pulse – surely she knew the answer to this! Taking a deep breath I explained that I had asked the OT if she could recommend any buggies for Isabella and that she had said I was entitled to one from the Wheelchair Service. No sooner had I told her this, she glanced over at the Graco buggy and blunty asked what was wrong with it!? Wanting to scream at her I remained calm and said that Isabella had outgrown it and we were unable to fasten her in using the 5 point harness.  She looked at me like I was making it up and then asked to see Isabella in it, trying my best not to lose my cool I put Isabella in the buggy and she yanked on the strap to see if she could magically make it longer! She then asked me if I had been recommended a buggy and told her that we had been told about the Phoenix. Very quickly she cut me short and said to Isabella, ‘You sit nicely don’t you, you don’t need that much support.’ By now I was fit to burst. She then turned to me and said that my best bet was to get a buggy from the high street. How I refrained from slapping her I don’t know instead I turned to Izzy and said ‘Your Daddy is going to be very cross, we missed our signing class, you got upset in the car and we are now being told to go to the high street after waiting months to come here for nothing!’ With that she quickly asked me if I wanted to see the buggy and sit Isabella in it!? Erm yes please isn’t that what I came for! After a battle of wills and her telling me that it is a cumbersome buggy and not very practical she told me if we wanted it would be here in 8 weeks! I said we did and left feeling totally disatisfied and more disillusioned than ever! To this day I still don’t understand why she is in a job like this, she has no idea how to deal with people and certainly doesn’t know how to do her job.In less than 3 minutes without even holding Isabella she had supposedly assessed her needs.

I could go on and on but it would be a record long blog! The OT is pleasant and nice, but my husband will often say what does she actually do? Even before Isabella had been seen I would spend hours on the internet looking for things that would help and support Isabella. The best find was her Recline and Grow Booster Seat which could be fitted to any chair and made feeding Isabella a dream, as up until then she was being fed in her bouncer. On the advice of the Pysio  I waited before buying anything else as the OT could help and make recommendations! Now I have gone back to doing my own research and seeking advice from other Mums with children with special needs. In fact it was a fellow Mum who recommended the Rainforest High Chair, which is the best seat Isabella sits in.  I understand that every child with special needs is different, but if I was an OT I would be aware of what products are on the market that may be suitable and make life easier for parents. For example both the Recline and Grow Booster Seat and Rainforest High Chair recline and the trays sit close to their tummys therefore making it easier to feed a child that cannot sit unaided.

I know that I probably expect too much from people but then I only want the best for Isabella and things to go as smoothly as possible.  Just small things like being on time, picking up messages promptly and keeping promises go a long way. Professionals who visit us at home will very often say to Isabella oh your toys and sensory things that Mummy buys you are much more interesting than mine. Instead of saying something do something about it, buy some new toys to take around to patient’s houses. A lot of Isabella’s favourite items are only from the pound shop! When it came to fitting Isabella in the Bee Chair the OT  said that we should wait and let her do it. That turned into a nightmare, as she was no more competent than myself or my husband. Isabella became very stressed and had a melt down whilst she was fiddling with it, dropping screws and reading the instruction manual.

My final note has to be about lack of knowledge. Myself and a friend are looking for chair that is portable and that can be taken to restaurants and friend’s houses. We thought we had found the answer in the Leckeys Squiggles seat sadly it was too small. The only bonus was that the Leckey Rep mentioned the ‘Kidz South Show’ on the 15th June, which we had never been told about by anyone. Not to be outdone the OT then said she could always get the Joncare rep to come out for a seat fitting. On doing further research my friend found that the Joncare showroom is only 20 minutes away from us and open to the public! Now surely that is something the OT should know? What’s that well known phrase again? If you need something doing, do it yourself……

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6 thoughts on “So tell me what is it you do?…

  1. So frustrating. It’s bad enough to lack commitment and knowledge in an “everyday” job, but when your job involved making a significant difference in the life of a child you need to give 100%. Her lack of knowledge is harming children. Good thing your daughter has you to fight for her x

  2. Tracy you are an inspiration to all of us. I really don’t think I could cope the way you have. Some so called professionals make me soo cross. x

  3. Sadly it seems that special needs parents have the same problems everywhere. Thank goodness for the internet, where we can find information for ourselves and hook up with other parents and blogs. Best wishes to your lovely daughter x

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