Monday, 9 December 2013
Today (8th Dec) my daughter took part in her schools nativity concert. She was in the school band and had to play the tambourine and bells. We had arrived at the church early to get a good seat up in the balcony and so determined that my daughter acknowledge all the friends and family who had turned out to see her today we all stood up and did a Mexican wave to her. Did she wave back? Did she hell! She just kinda smirked at us and rolled her eyes! Embarrassing? Us? NAHHHHHHHH!!!
So, when it came to my daughter standing up in front of a whole church full of people and playing her little bells, I sobbed like a baby. There was my little girl trying so hard to get everything right in front of so many people. As she was playing beautiful music with her fellow classmates, little children on walking frames and in wheelchairs made their way up to the front of the church. Some were dressed as angels, and some dressed as shepherds. I was so proud of each and everyone of them. How brave and inspiring are our wonderful children! I cried and I cried with sheer pride! Children who ordinarily would shy away from crowds and noise and who would have trouble coping with social situations stood proud today. All the parents stood with chests puffed out with pride! And rightly so!
Now, those of you who know me well know that I have absolutely no religous beliefs. I have to say that today reaffirmed with me why I choose not to believe in a God of any sort. While our beautiful children were putting their whole hearts and souls into making the concert a success, the Priest today decided to use the whole event as a patronising political platform!
You know that old saying that we special needs parents hate.............' God only gives special children to special people!' Yeah there was that! A lot! Now, that just makes me wanna smack people in the gob! Enough already!!Arghhhhhhhhhhhh!!!!!!!!!!!!!!! And then, just when he couldn't get more annoying, the Priest then said 'make sure you vote against abortion cos people abort children like yours every day!' Did he consider that in the congregation today where people who had actually had to go through the trauma of abortion, for whatever reason? No he flippin well didn't! Anyway, despite anyone's beliefs, and we are all entitled to have beliefs, this was not the time to shove them down everyone's throats! Ok,so I have never actually assaulted a man of the church before but came pretty close today. Feeling the need to swear.................(insert your own swear word here).
Let me just be controversial here...........................
1. Special needs children are NOT a gift from God.
2. Special children are NOT given to special parents.
3. Its no ones business if we have views on abortion or not so bugger off!
4.Yes I bloody would change things if I could!
5. Special needs parents are not angels who accept their lot with courage................we get pished, cry a lot and swear at the hand we've been dealt! Oh and yes we actually have sex too! We aren't that angelic!
I did worry that I was being a tad sensitive about the whole thing but I did actually see a look of sheer horror on my 20 year old son's face during the service. That confirmed for me I definitely wasn't! I've since heard from other parents who were equally upset by the whole thing. Should a children's service have been used in this way? I think not! It did spoil what was up to that point a brilliant afternoon. But, after discussion with other parents we have decided not to let this idiotic man take away the beauty of the day. So, I'd just like to say to that priest.............UP YOURS! Merry Christmas!
p.s Sorry this turned into a ranty post.
p.p.s My daughter rocks!!!
Posted by JB JOHNSTON at Monday, December 09, 2013
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