Sunday, 24 November 2013
Now that FD is 15 I realise that I need to really get the ball rolling proper in trying to give her more independence skills. However, being the mother of a special needs child I have one thing holding me back............FEAR! Other parents will understand what I mean when I say Fear. It is that heart crushing thing that infects everything and sometimes has you making safe decisions rather than practical ones. I am lucky in some respects because I work in the same building with a learning disability social work team who are fantastic at offering me advice around FD. They have met her and she attends their art group so they they know her quite well. They view her as being a lot more able than I sometimes give her credit for. So, what is is that has me wearing blinkers sometimes around FD's abilities? Is there a part of me that wants to keep her safe and the only way to do that is for me to do everything for her? Or, and I am ashamed to say it, underestimating her?
Over the last few years we have been tentatively trying to encourage FD to be a little bit more independent and do things for herself. However, other parents will understand when I say that sometimes its just easier and quicker to do the damn thing yourself! And, I suppose that's wrong of us because we are further de-skilling our kids. So, this weekend I have decided to turn things up a notch and be more encouraging to FD, allowing her a little more indepence and teaching new skills.
We are very lucky that FD attends such a wonderful special needs school. The school have been teaching some life skills and its now our job to continue that teaching at home so there is consistency of learning. So, with this in mind FD was informed that every weekend she would be making her own breakfast. What could possibly go wrong!? Thankfully not a lot did! I decided not to even be in the kitchen with her and waited rather impatiently in the lounge while she prepared her breakfast. I could hear her pour the cereal. Quite a lot of cereal! I didn't even jump up when I heard the word 'oopsie' a couple of times. Nor did I react when the dog walked into the lounge covered in Rice Krispies! So, as I sat on the sofa, picking cereal out of the dogs fur I contented myself with the fact that FD hadn't yelled for the mop!
Next, and quite unexpectedly I heard the sound of the toaster! FD was making toast! I sat and waited for the smoke alarms to start beeping and when that didn't happen I began to relax a lot more! I very casually walked into the kitchen to double check FD hadn't decided to make herself a fry-up, and there she was looking very please with herself, butter smeared face and all! The kitchen did resemble a house that had been burgled and the floor crunched as I walked on it. Obviously the dog was not the only thing covered in cereal!
Later on in the day FD wanted to go to the ATM. This kid has more money than the Bank of England vaults! She loves to save her money and enjoys nothing more than going to the ATM with her cash card in her sweaty little hand, and checking her balance. Getting her a bank account with a card was such a big deal for her as she feels so grown up. At the cash machine I reminded her that she owed me some money. Now, please don't think I am a meanie mummy, but we have always taught our children that yes we will provide them with most of what they need, but sometimes they have to pay for their own things. FD had desperately wanted an expensive pair of boots and I bought them on the understanding that she would contribute toward the cost. So, off to the ATM we trotted. Now normally I press all the buttons for her but this time I told her that she had to try and remember all the right buttons herself. She was a bit nervous about it, terrified that all her money would come out of the ATM. A bit of reassurance and she managed it very well. She jumped about waving her money in the air to the amusement of passersby!
Whilst these two activities would seem fairly trivial to most parents, to the parent of a special needs kid, and more importantly the kid themselves, these are two brilliant achievements. FD's confidence blossomed and she was so happy. I can live with the fact that every weekend my kitchen will resemble a chimps tea party aftermath. There are worse things in life! And, I can rope FD into helping me clean it and call that learning! Its a win-win situation!
FD just wants to be like every other 15 year old teen. Driving her and her friend to a plate making session at a local pottery, that realisation hit home. FD's friend also has a severe learning disability and is the same age as her. The two girls were sitting in the backseat of the car chatting away to one another and I can quite honestly say that I don't think I have laughed or cried quite so much listening to the pair of them. The chat was about boys, the school bus route, boys, fashion, Santa, Strictly Come Dancing and boys! They were just teens! Albeit, teens who needed a lot of support and with a very innocent and naive outlook on life, but teens nonetheless. My heart burst with pride. My little girl was growing up and faster than I was giving her credit for. There will be times when I will have to loosen the apron strings a little more and I know I will find those times hard. But, for the sake of my daughter, I will have to be strong. Sometimes I wonder at how I find the strength to get through difficult situations, and then I realise that I am not the one being Superwoman. It is my beautiful, courageous daughter.
Posted by JB JOHNSTON at Sunday, November 24, 2013
Thursday, 14 November 2013
Yesterday saw us back in hospital yet again. I wasn't too worried as FD was only going to get a few teeth out under general anaesthetic. We'd done it once before when she'd to get all her baby teeth taken out because the enamel had worn away due to her seizures and subsequent vomit fest! Anyway, I didn't even bother to pack too much with me as I reckoned we'd be home within a few hours. I didn't even bring a bottle of water or a bar of chocolate! All I packed was pyjamas for FD. FATAL MISTAKE! Anyone would think that given our vast experience of hospitals I'd be super prepared. It seems I had become complacent!
We arrived at the hospital at 8am, as instructed. By lunch time we were still there! No teeth had been taken out yet! My stomach was rumbling like crazy but FD, who had been fasting from the previous evening had a tummy rumble like a mini earthquake! She cried because she was hungry. She cried because she was bored, despite the play therapist providing her with lots to do. She cried because she wanted to go home! She was so nervous that we were at the loo every five minutes! I did manage to have a bit of a laugh though during one toileting moment when FD sat on the toilet with her fingers in her ears. When I asked what she was doing she informed me that this was so the other people on the ward wouldn't hear her going to the toilet! I can sort of see her reasoning!
Eventually, at 2.30pm FD was taken to the operating theatre to have 3 teeth removed. Leaving her in the theatre brought back so many memories about her spinal surgery. I thought I was going to break down! However, FD was more than happy as she was surrounded by some very young and quite handsome doctors. She kept smiling and fluttering her eyelashes, right up until the point she fell asleep. I sat outside the theatre and chewed my fingernails to stumps! When she eventually came out of theatre and I saw her sad, puffy little face in the recovery room I wanted to cry! She took my hand and mumbled something. I couldn't make her out so moved my ear right in front of her mouth. And, this is what she said..........'Why am I in a room with old people?' Well, what can you say to that! There were indeed some elderly patients in the recovery room!
On the way back to the ward, the very sleepy and bleary eyed FD waved at every doctor she saw. Pulling her teeth out was not gonna stop this kid from flirting outrageously with every male in the building! She even tried to sit up in the bed when she spotted a very young looking doctor walking behind me! Thank goodness he couldn't hear her mumble, 'oh sexy!' You've just got to love autism!
Back on the ward and poor FD proceeded to have a seizure and throw up. I narrowly missed a fountain of projectile vomit as it headed my way like a heat seeking missile! So, we had to hang about the hospital for a little while longer to make sure she was OK. At 8pm I decided enough was enough and we went home. The nursing staff were happy that I could probably look after FD more effectively at home, amongst familiar surroundings. So, 12 hours after we arrived at the hospital we finally left for home.
FD had a bit of a restless night last night so we are having a pyjama day today. She's slept most of the day thankfully, although is still not eating very well. But, that will come once I can convince her that her other teeth aren't going to fall out. She hasn't asked about the tooth fairy yet so I'm hoping she's forgotten and I can save myself a small fortune! The important lesson to be learnt from our little hospital adventure is to pack these essential items, even for supposedly short appointments:
1. Bottle of water
2. Bar of chocolate
3. Charger for phone and ipad
5. Superwoman Knickers!
Don't say I didn't warn you!
Posted by JB JOHNSTON at Thursday, November 14, 2013