The benefit of living with disability

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Disability can seems so negative at times: Professionals discuss what your child struggles with, doctors talk about what is ‘wrong’ and disability forms focus on all the things your child is not able to do. Education, health and social work see your child’s needs as ‘costly’ and therefore we have to fight for everything. Is it any wonder so many parents of disabled children struggle with depression and lack of enthusiasm?

I could easily join them. The lack of sleep, constant phone calls and paperwork and a diary full of meetings could steal the joy from me. The fact my almost 6 year old son has no speech and both him and his twin sister are still wearing nappies could have me begging my doctor for antidepressants. I could grieve for the children I dreamed of having. I could get bitter and angry at the injustice of it all. I could spend my days hiding from the world hoping all the children’s difficulties will disappear if no-one sees them.

But I can not go there. I have to keep my head above the water; for my sake and for my children’s sake. I am not writing this to make people think that disability is wonderful, nor am I writing this to make those who are struggling with the reality of life feel even worse. I am writing this for me: because I need to hear this everyday. On the days when I could run away, the days when my son screams endlessly and self harms, on the days when it seems we are getting nowhere fast. Even on those days there ARE positives. It is just harder to see them in the daily grind that is looking after children who require much more time and attention than others.

So here goes:

Benefit number 1: My heart is much more compassionate because I live with disability.
Not only is my heart more compassionate but so is my 5 year old daughter’s. She recently started school where two of the children in her class only speak Russian. There is no interpreter and naturally the children are struggling. Where other children are finding it challenging to understand the frustration and problems these children face my daughter has been a real friend to them holding their hand and sharing with them and communicating love without words. She struggles herself with severe anxiety and living with a non verbal brother she has had to understand the importance of non verbal communication so well. Her brother has taught her that love needs to words.
Before I had my children I thought I was a decent person. But there is something so humbling about facing a struggle yourself that opens your heart to others who are also struggling. Their struggle may be so different from yours but you understand that need for others to support you and help you. Living with disability opens your eyes to a non perfect world full of others struggling along too. And it opens a door into their lives because you can say ‘I understand’. And that is precious.

Benefit number 2: I appreciate life because I live with disability.
When you suddenly need health services and therapists, support workers and social workers, when someone else is willing to change your child’s soiled nappy for you; you learn true gratitude. Yes there are times when we have issues with professionals and we disagree on the best way forward. But the fact they are there to disagree with in the first place is such a blessing. My children could have been born into a country with little resources to support them and no suitable education available to meet their needs. Things may not be perfect but everyone who plays a role in my children’s lives suddenly becomes an angel to me. I appreciate feeling the wind and rain on my skin because there are families so much worse off than me for whom their disabled child is in hospital right now unable to feel that rain. I realise how blessed I am daily when I am in a world surrounded by children for whom every day is precious. Hearing of a child in my sons school getting ‘star of the week’ for simply opening his eyes is something that deeply affected me. Who am I to complain? I got to kiss my children good night tonight and that is precious.

Benefit number 3: I understand hope because I live with disability.
I used to think hope was dreaming of getting a well paid job and marrying someone tall, dark and handsome. Hope was looking for a better future and the positive feeling that things would always get better. But when you live with disability hope goes much deeper. Hope for me is seeing my son struggle daily to try and communicate without speech but still in the midst of that believing one day he will be able to say real understandable words. Hope was hearing doctors say they had no idea when my son would walk but buying him shoes to wear knowing one day he would have them on his feet when he walked in the garden. Hope right now is buying a t-shirt in his size in anticipation that one day soon he will want to wear something other than his beloved red school jumpers. Hope is never giving up. Hope is believing my children can achieve and stirring others into that confidence too. Hope is precious.

I could write so many more benefits. I could talk about all the amazing families I have met through being catapulted into the realm of disability. I could mention the charities who have supported me and how this has changed my entire outlook on giving to others. I could talk about how my circle of friends has increased greatly through having disabled children, how having disabled children has helped me be a better, more emotional writer. But these are all for another blog. And another day.

I just want you to know that even when things are so tough and real issues scream at you in the face daily, there is always hope. We can appreciate life and open our heart to others. My children are making me a better person. Even in their struggles there are so many benefits to living with disability. I just need to remind myself to keep on looking for them daily.

Sometimes autism wins…

You can turn anything into a positive if you try hard enough. But however you look at it, somedays autism wins.

For example it was so easy to pack my sons clothes for a holiday as all he will wear is his red school jumpers. I can even joke that he is saving me money buying him holiday clothes. I laugh about the fact he is slowly turning those jumpers into pull overs as he eats his way up the sleeves. But that joking hides the sorrow in my heart that every time I see him in that school jumper I realise that once again autism has won. If you were scoring the days then before anyone has even had breakfast in my house it is clear that autism is on the winning side. I have to choose my battles. And right now this one is just beating me. So I turn it into a positive. Autism might win the battle, but one day I might win the war. And if I can get him to do more things, be a little more flexible during the day, or wait without screaming then autism can win the red jumper for another day.

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You get used to pushing a stroller around and you actually forget sometimes that the ‘baby’ is actually almost 6, until someone looks at you like you have horns in your head. Hey, I say to people, having a buggy makes carrying bags much easier as you can hook them over the handle bars. Pushing a buggy gives you something to lean on when you are tired, and stops you having to drag a child along kicking and screaming. I have to dwell on the positive. Because the fact that this week I took both children on a train ride into a city centre and had to put both my five year olds into buggies in order to achieve anything could really get me down. It is another sign that this week autism won. It was the only way my family could go anywhere safely. It was the only way the children could cope with the noises, crowds, walking distance and strange smells. It made boarding and alighting the trains very hard, it made getting over the bridge to the other side to get the car like a mountaineering expedition, and it filled the car boot before we even tried to get a bag in. But although autism won, it was actually a win for us as we managed a day trip out and we all had a good day.

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So we tried to go out again. This time we tried a farm. One child loved it. The other lasted a few minutes before having to be carried back to the car. Autism prevented me even getting pics of the child who was loving it.

We moved on to an indoor adventure centre. One loved the toy shop and wanted something from the cafe. The other was so preoccupied with the lift and automatic doors that one parent missed out yet again. Sometimes autism wins…

We’d packed a picnic so we found a lovely park by a castle to sit on a bench and eat. One was so excited. The other could see a macdonalds at the bottom of the hill and that was the end of that. Why would anyone eat cold sandwiches and fruit when there are hot fries and nuggets at the bottom of the hill? It seems at times like this we are fast losing the war. So many battles…which ones to fight, which ones do we just ride out?

Never judge a war based only on what you see at first glance. It might seem like autism is winning but in actual fact we are making progress.

This week the children have both thrown toys for granny’s dog. They have played with and interacted with something other than ipads and trains.

We have had fish and chips outside watching ducks at a pond.

We have been for walks and seen sheep and cows as a family.

We have even managed to eat out at a buffet restaurant.

One of the children ate chips for the very first time.

We are not allowing autism to keep us at home during the summer holidays.

Autism, you might think you are winning because the children are still in nappies. You might think you are winning because one still can’t talk. You might think you are winning when we abandon plans and try something else. You might think you have won the war because we let the boy wear a red jumper everyday.

But don’t be fooled autism…

Sometimes autism wins…

And sometimes we laugh and smile and have fun like it never even exists. It’s all about being in it for the long hall. The war isn’t over yet…and the summer holidays have only been going for a week!

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You have no idea how much I needed that!

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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