It has been a week of all the usual stresses, appointments and lack of sleep that comes with have two special needs children. But right this minute both children are asleep and I have just finished an entire cup of HOT tea. Very much a non event when the children are awake. You have no idea how much I needed that tonight!
This time last week my daughter was still distraught at the ongoing toilet training her nursery were doing. She was crying the second you looked at her, waking in the night with nightmares of being taken to the toilet and believing she was a failure at everything, at the tender age of just 5. I was the one listening to her cries for help, wiping the tears away and trying to give her self esteem the needed boost whist in the background fighting with professionals to support me in realising what this was doing to her. Of course I want my daughter out of nappies but she has to be emotionally, physically and mentally ready for it. And she wasn’t. Finally on the Friday afternoon, after two very long and stressful weeks, I received the phone call that brought the answers to my prayers. It had been decided that she needed a break from toilet training and the programme was now changing from enforcing her to be toilet trained in time for starting mainstream school in 5 months time to ensuring any supports would be in place within the school to support her in this area. When you feel like you are banging your head off a brick wall and getting nowhere it is so emotional to finally know that someone has listened and is implementing change immediately. You have no idea how much I needed that phone call! It was like finally hitting gold when you have been digging in the dark for weeks getting nowhere.
This last week has been the usual leaving soft play early because Isaac is lying on the floor screaming and banging his head because he no longer wants to be there for any 101 reasons he can’t communicate. The usual being pulled away from your dinner that you have just sat down to because he has finished his and wants to drag you to the freezer that he is perfectly able to open on his own but won’t. The usual stripping off, only wearing his red school jumper every day of the week, the high pitched screams because he wants you to type something into google images but you have no idea what. The usual meltdowns whenever you go out because the car went somewhere other than school. The daily eating with his fingers and having food all over his face, clothes and table at 5 years old. The general lack of comprehension, inflexibility, inability to communicate, lack of speech and exhaustion due to lack of sleep. But then I took him to church with me. Just me and him. His sister was ill with an ear infection and dad stayed at home to look after her. This was an invitation for chaos if you ever expected it. Change of car, change of parking space, no mobility buggy as usual, different seats. Was I crazy? Well sometimes you just HAVE to try! He held me hand, walked into church, sat down beside me on a chair like everyone else, and he sat quietly playing his iPad throughout the entire worship until just before the children were dismissed from the service. Granted he thought he should exit via the stage, but I grabbed him in time and he held my hand and walked into creche and stayed without me being called out once. It has taken 5 and a half years to get to this stage. With all the challenges of the week Isaac had no idea how much I needed him to do that that day. Being in church for a service was like having steak for your dinner when you have lived on bread and water for years.
This last week the fridge broke too. While dad set about cleaning, fixing and generally defrosting it all, it meant the entire contents (these things always happen when you have just done a full grocery shop) had to be taken out. While Isaac saw this as an open invitation to ‘help out’ by systematically eating it all, Naomi saw it as a opportunity to line all the food up in lines for us and give me a running commentary on her dads endeavours at fixing the fridge. The unplanned trip to the electrical store of course meant the children needing to open and close every door of every fridge and freezer in sight, only for Naomi to say that none were suitable as not one had any food in for her brother! With medication that needed to remain refrigerated and the constant alert needed to ensure the entire contents was not devoured by Isaac in one sitting, getting a new fridge was somewhat urgent for us. The sales person said he had only two choices of delivery days available left…and one was the very next morning! You have no idea how much I needed to hear that! It was like running a marathon and finally seeing the finish line in sight!
Yesterday we had two hospital appointments in one day. The first brought new information regarding a rare genetic disorder than is in my family. Over twenty years since first hearing of the disorder the gene has now been found and so my blood was taken. Now the wait for more results and very likely genetic testing for both children too. Not the best thing to hear at 9:30am on a Monday morning. The second appointment of the day was a tumour check up for Isaac. His clinic was running over half an hour late. With a severely autistic 5 year old who has just had his routine interrupted by being collected from school early, who is tired, hungry, thirsty and confused as to why he has not been taken home, you know the wait will be a challenge. But we got through it thanks to fluorescent strip lights in the waiting room that he paced up and down staring at and then a short play on his iPad. Then the dreaded transition from the waiting room into the doctors room. But Isaac sat in his buggy and continued on with his game. In the years this doctor has been seeing Isaac regularly she has yet to see him not screaming and self harming. For the first time yesterday she saw him settled, despite the obvious self harming bite marks all over the back of his hands. And even better, his height, weight and general health showed that at present there is no need to be concerned about any of his tumours. Oh doctor, you have no idea how much I needed to hear that. It was like carrying around a heavy backpack for years and suddenly someone lifts it from you. Please let him stay healthy God.
This weekend the twins have respite for a few hours. They love it and the staff love them. You have no idea how much we ALL need this!
I am choosing to dwell on the break from toilet training, the one time Isaac sat in church, the fact we have a new fridge and there was still food here left to go into it when it came, the current stable health of Isaac and the fact he finally saw a doctor without screaming and biting himself. All the other stuff could get me down and I refuse to go there. So I cling onto the positive at all cost…you have no idea how much I need to do that. It is like seeing a rainbow after days of solid rain and realising that finally spring is just around the corner.
“Whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things” Phil 3:8