The last few weeks have been busy.
Life is always busy but it’s been busier than usual.
The end of the summer term brings school trips, sports day, play performances, open evenings and the perpetual panic that you have forgotten to contribute to one of the numerous end of term teacher collections.
Add in a World Cup, Wimbledon, the latest series of Love Island and a husband who takes a business trip (holiday) to America for a week then you are not left with much time to put pen paper.
Bob has been busy as well. She has had the usual end of term activity schedule but she has also been attending transition sessions at her new school which she will be starting in September. These have gone well so far. The school have a number of animals including a donkey and a dog so she’s pretty chuffed.
Bob has also had a flurry of appointments ranging from an annual review with her paediatrician to a trip to the special needs dentist with a whole host of others in between.
When Bob was born, we were quick to establish a support network to guide us through the new world of Down’s Syndrome and special needs parenting. We researched online, read books, joined support groups and built relationships with the professionals involved with her care.
It quickly became clear to us that appointments to and visits from professionals would become a permanent fixture in Bob’s life. What was equally clear was that we would need to have a good working relationship with each of them if we wanted to ensure that Bob had the best possible chance to succeed in life.
We’ve seen it all over the years. The good, the bad and the ugly personified by the health visitor who visited me at home twice a week for six weeks, the ophthalmologist who prescribed the wrong glasses and made one of Bob’s eyes shut down and the speech and language therapist who told me she saw no point in seeing Bob with any level of frequency as her progress was so slow. Luckily for Bob (and my stress levels), that speech and language therapist moved on after a year.
Over the years we have managed to accumulate more professionals than we have lost and at the moment there are around fourteen who work with Bob.
As the parents of a child with special needs, I think of myself and The Husband as a hub. We are the control panel who collate and store the information reported by the professionals. We are the people who act on the advice given and hold the school to account when guidance is not appropriately followed. We are the people who complain to County when professional advice is not reflected correctly in her EHC Plan and we are the people who make phone calls chasing for an appointment when clinics are in short supply.
Where possible, The Husband and I attend appointments together. However, there are two clinics which I actively avoid and have delegated all responsibility to my other half.
The first is the special needs dentist.
A couple of years ago, our family dentist thought it would be a good idea to put his fingers in Bob’s mouth to try and get ‘a good look’. This back fired. She bit him. This was the moment where we realised it was probably a good time to enlist the help of a specialist clinic. The Husband assures me that she is now very compliant and even ‘enjoys’ going to the dentist but I’d rather not test it out.
The second is the ophthalmologist.
Bob has been wearing glasses since she was 15 months old as she is extremely long sighted. For the first few years she saw our family optician who was wonderful with her. However, when she started school, we accessed support from the Visual Impairment Team who were insistent that her care should be managed by an ophthalmologist at the children’s eye clinic. Not being one to break the rules, I dutifully took Bob to the eye clinic. She would not sit still, I could barely restrain her and she kicked the ophthalmologist in the testicles. Mortified doesn’t come close.
Aside from the professionals that are involved with Bob’s education, it is the eye clinic team that we see the most often.
As well as having her eyes checked every four months, Bob also has a habit of losing or breaking her glasses. Flexi frames are no match for Bob. We’ve had spectacle arms ripped off, lenses popped out of frames and frames snapped in two. Glasses have been stealthily thrown from moving pushchairs and hidden in the depths of the house. With each loss or breakage, I have to complete an NHS replacement frames form. On this form I have to explain why we are requesting new frames. My personal favourite was when I had to write that ‘Bob threw her glasses on the floor whilst she was sitting in a shopping trolley as I was loading shopping into the car. Before I realised they were no longer sitting on her face, I heard a loud pop as a car drove past. Said glasses lay pulverised on the ground having been decimated by a tyre. However, one lens remained undamaged. I have bought this along to be placed in the new frames so only one new lens needs to be ordered…….’
I thought we were on the homeward stretch now. All the jobs for the end of term had been done – I’d even bought the uniform for the new school and arranged some appointments for the Autumn term.
But as usual, Bob has other ideas.
Just last week she went on a fabulous school trip to an outdoor centre. She was immersed in paddle boarding, canoeing, hiking and eating sausages charred on the BBQ.
She returned home dirty, a bit smelly and very tired.
And without her glasses.
Apparently these are at the bottom of Caldecotte Lake.
I guess I’ll be filling out another form on Monday morning.