Ten signs I dread as an autism parent

I have two children with autism. Some days are wonderful, calm and peaceful but some days my children become so distressed over something and there is very little I can do to calm them down.

This week for example I took my son to the local store with me only to discover his favourite lift was ‘out of order’. It took hours for him to get over that sadly. Then today I had to take him for an appointment at hospital but on our way back to school one of the roads was closed and I had to take a diversion. This change caused so much upset it took three members of staff to support him back into school.

thise are just two examples of how a sign can cause so much upset to my children, even though one of them still can’t read. I try and avoid the following ones as much as possible.

1.
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After today I will be checking websites before trips as this simple red road sign caused so much upset and confusion. Rigid thinking means my son expects to go the same way every time and this is just not allowed!

2.

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Sticking with road signs this one particularly makes my daughter cry! Her sound sensitivity means that even with ear defenders on the noise of people digging up a road is more than she can bear.

3.

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My final road related one is this.

Stopping or waiting is not something either of my children find easy at all. This little light has caused so much screaming, yelling and biting in my family. They may have to learn but the less of these I have in any journey the better off we all are!

4.

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So we did the social story, the now and next board and then navigated the journey only to get there are find this! This one has to be one of the worst signs any parent sees when they have excited, prepared children. Sometimes, just sometimes, Google is wrong and opening hours are NOT as advertised. The fall out from this one is BAD!

5.

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They want one thing for their birthday, just one thing. And all you see is this! Or in my daughter’s case they have a very limitted diet and only eat a certain brand of a certain spread. But the shop shelf has this. This one sends me into as much of a meltdown as my kids!

6.

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Sticking with the food theme. So you stocked up on the few things they will eat but finally you realise you need to restock…and you see this small but terrifying label on the top corner! Run for your life…this is as major as a packet changing in my house! Don’t kid yourself…they will notice!

7.

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Please be quiet? Are you serious? Have you tried to keep any child quiet anywhere, let alone a non verbal child with autism. My children make their presence known and find it pretty much impossible to keep either of them silent.

8.

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This sign is so hard to explain. Unfortunately my children live in the age of instant wifi and can not yet work out why anywhere would not have free instant access to the Internet. Neither of them can understand why apps don’t work in certain places or why they can’t keep watching you tube in the car. We have had lots of outrage over this one!

9.

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Sticking with technology this little red face has in turn made my little darling’s faces turn a similar shade. I have nightmares about this little icon! For those who don’t know this one means you tube has stopped working…in other words the world has ended in my house!

10.

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And finally, you may wish to look away from this one as the sight of it has brought many an autism parent to tears. The meltdowns this has caused can not be counted. Apparently technology should have endless power and energy…rather like they expect me to as an autism parent too.

Looking at these signs has driven my power to less than ten percent too, so I will leave you with my favourite sign ever as an autism parent:

Race you there!

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This is my ‘normal’

This is my ‘normal’

The intense sadness is beginning to ease now. Waves of heaviness still creep up on me at times but I cry, wipes my tears away and face another day with a smile.
Maybe I am getting to that point of acceptance?
Maybe I am realising it isn’t the end of the world and I still have two beautiful, amazing children?
Or maybe it has all just become ‘normal’?

I looked back on some old videos and photos this week. There were happy moments of my children playing, flapping moments at lifts, lovely memories of my daughter singing, and too many photos of my children eating! Reminders of how things were and a stark reminder that in many ways things are just the same.image

My son still has his chubby cheeks, big brown eyes and cheeky smile. My daughter has stunning golden hair, piercing blue eyes and beautiful petite features.
And my son is still not speaking…

This is my ‘normal’.

Since my children were months old I have been trailing them regularly to hospitals and clinics. We have so many professionals involved they have to add extra chairs at every meeting. If we decide to change something, if my children have medical issues arise or don’t eat their dinner for a couple of nights I feel I have to call everyone to keep them up-to-date. I have phone calls from schools, people dealing with our children, and others who have just received referrals about them on an everyday basis. We have to take our mobiles everywhere and be available to pick our children up at short notice at any time. Every week I have to discuss with transport about times my child will not be at school due to appointments.

This is my ‘normal’.

I have visuals in every room of my house, we have regimented routines, I read the same bedtime story every single night. I make the same dinners, in the same way, at the same time every week. I buy my children the exact same shoes in the next size hoping they won’t notice I have changed them as their feet grow. We visit the same places we have been to before. I use google street map to show places before we go there and I have become an expert at knowing where every single lift is in every shopping centre within travelling distance of my house. I spend hours watching hand dryers with my son because it keeps him happy.

This is my ‘normal’.image

I can’t tell you if, or when, my son may speak. I can not tell you if, or when, my daughter may overcome her severe anxiety or be able to speak in school. I can not say if, or when, my son will ever stop wearing nappies. I do know my son is unlikely to ever attend mainstream school in any capacity. I have no idea if he will ever learn to read or write. I have no idea if his tumours will grow anywhere else in his body or if his seizures will remain stable.
I live with uncertainty. But I also live with intense gratitude.

This is my ‘normal’.

I am thankful for everything. I celebrate the mundane. I kiss and hug my children in private and in public without caring what anyone thinks. I smile because I have a thousand reasons and more to cause me to. I laugh with my children. I treasure life and find enjoyment in everyday moments. I take pictures of my children like tomorrow is not guaranteed. I love with all my heart because my children have taught me too.

This is my ‘normal’. And normal is good.

I’d rather walk through the storm with you

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Winter in Scotland can be brutal sometimes. Yesterday morning was one of those mornings. Cold, wet, very windy and still pretty dark as the children needed to leave for school. So even though her school is, at most, ten minutes walk from our house, I offered my little six-year-old the chance to take the car.

‘No’ she insisted. ‘I’d rather walk through the storm with you.’

So we wrapped up, zipped up and headed outside.

There were times when she was almost blown away. But we held hands tightly and neither of us planned on letting go.

There were times we could hardly see where we were going. But we just kept walking, one step at a time, encouraging each other every step.

There were moments I thought we should turn back and climb into the warmth of the house or the dryness of the car. But we had a determination and a purpose and the destination was within reach. It may have only been a ten minute walk but there were moments it felt like eternity. The intensity of the wind, the driving rain in our faces and the cold taking our breath away. ‘Keep going’ she told me and keep going we did.

Of course we arrived. We were a little windswept, our clothes were wet and our faces red from the cold. But as I left her in the safety of her school and walked back home myself through that storm I realised the value of walking that day.

My little daughter was gaining strength, courage, determination, and the gift of encouragement this morning that going to school the easier way would not have taught her. And she chose to do that of her own free will. She wanted to go through the storm with me because she loves me.

I feel like I have been walking through a storm like that for years. When I found out my precious children were not like other children it felt like I was being beaten down by a gale force wind. Constant appointments, diagnosis and fighting for what they need feeling like cold, icy rain forever falling on top of me. The waking up every morning facing the same pressures of caring like the darkness of a cold winters morning that never seems to end. The not knowing the future like the freezing cold temperatures numbing you to the pain.

It is so much easier to get through the storm holding someone’s hand. There is strength that comes from the encouragement of another little voice saying ‘keep going’. There is a love that grows deeper, a bond that gets stronger and a determination that grows continually by facing the storms of life with another one.

Don’t go it alone.

I know that having you all alongside me is what is making this thing called life easier.

Everyone one of you means so much to me.

Don’t let go of my hand please…because I’d rather walk through the storm with you.

There is more than meets the eye

 

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It is the first day of the new school term here and my daughters first ever day at school. I took the standard parent ‘first day back’ photos and posted them on social media. The usual comments ‘they look so smart’ ‘good luck’ and ‘have a great day’ all touch my heart.

There is so much that has gone into today, way beyond the simple purchasing of new school wear, shoes, washing and ironing uniforms and packing bags. For weeks now I have had to prepare these children for this major change in routine, even though it was previously familiar to Isaac. Seven weeks is a long time in a child’s life to get used to going out with the family, eating lunch at home and playing with toys and technology.

So my autism mummy mode took over and prepared social stories for Naomi, visuals for Isaac and lots of walks to Naomi’s new school even though it was closed. Both of them have books all about their summer to take into school. And we have read about Topsy and Tim, Biff, Chip and Kipper and everyone else you can think of starting school!

Isaac has a photo album full of stories and photos to share with his teacher. He has no other way to share his experiences from the last two months as he can not speak. I sat with him for days going through all the photos we had on his Ipad and having him point to the ones he especially liked. Then I sent them off to get printed. There was no surprises that the majority featured food! But it is his story and if he was able to talk these are the things he would want to tell his new teacher about. As his teacher is brand new to the school and only knows about Isaac from information the school has (assuming this has been read), I so hope someone will sit with him and take a few minutes to allow him to share his summer with them. This is as much about transitioning from home as it is to school. We are all in this together.

Naomi’s new school had given the children a summer scrapbook to do at home. The pages were blank which immediately caused Naomi huge anxiety. She needed guidance and instruction and clear boundaries and pages that could contain ‘anything about your summer’ where far too vague. So I helped her structure her ideas and we had a lovely time together as she drew her family, stuck down photos of some things she enjoyed and cut pictures from magazines. Once again I hope someone takes the time to get to know my daughter and puts no pressure on her to speak if she can not yet overcome her anxiety to do so.

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We hit some very real challenges when we found out that transport arrangements for taking Isaac to school were all changing. I sighed. If only the ‘powers that be’ had any idea how change affects my babies. For the sake of saving pennies they change contracts and providers taking no account of the needs of the children. How would they feel to watch their child bite himself, bang his head and run back inside the house when he has to meet a new driver and escort and see a new taxi? I bet their heart would break like mine. But I swallow hard and do what we can. Take photos of the people, the taxi, and his school. But still we have the screaming and the self harming. And all I can do is pray; pray that he might one day understand, pray for patience for these new people in his life and pray for a way to help my baby understand. And then I realise our fatal mistake! We arranged for them to visit at dinner time! It really was that simple. We had been saying ‘see taxi’ and ‘new driver’ and ‘school taxi’ to him and in his mind he never gets in a taxi at that time of day and he certainly doesn’t go to school after his tea! So when it came to the day, the one you all see the photo of, off he went. Because that was right: first taxi, then school! And the promise of a school dinner had him flying right out the house. (was my cooking for the last seven weeks really THAT bad?) Can you tell any of the trauma we went through just from the photo?

There’s more than meets the eye.

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As I took Naomi to her school for the first day and finally left her in her classroom sitting at her desk with all the other children I had the same emotions as all the other parents there. What you don’t see is the fact she is the first child to go to that school who isn’t toilet trained. She is the only child in the room wearing a nappy. And she drank her milk that morning from a bottle too. But as all the other parents made their way out of the building a line of adults waited to talk to me. Then I suddenly realise there is more going on: An autism outreach worker, two classroom assistants, the class teacher and the new Head teacher too all waiting to introduce themselves. Though they were not in today there will also be speech and language therapist, occupational therapist and various other professionals involved too. Because I have pushed for as much support as I can get. She may be going to mainstream but she will jolly well be supported.

There will be meetings, reports and iep’s written up within weeks. There are still some unknowns but she went there today, and she held it together. And I am so proud of her for that.

This afternoon and tonight we will have the aftermath of the first school day. The stress doesn’t end for these children at the school gate. Autism, nf1 and developmental delays are 24-7. We will have it today, tomorrow and forever.

The photos are a great memory of one special day. Thank you for liking them, commenting and loving us.

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Please remember though that behind those photos there is more going on than meets the eye.

And that will be the same for so many families of special needs children too. 

Ten tips for surviving the summer holidays with special needs children

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Three and a half weeks ago my children finished up at school and nursery for 7 weeks holiday. Although I love my children deeply I admit I was worried how we would cope with the pressure of looking after both children without any breaks day or night. Both my children have autism, one has neurofibromatosis and other complex needs, and they are both fully incontinent. One of them is non verbal and very delayed. They both have medical problems and need a high level of supervision and care.

So how do parents like me cope with being mum, entertainer, taxi driver, speech therapist, nurse, occupational therapist and support workers to our children for almost two months without a break?

I may not have completed the holidays yet but here are my top ten tips for survival when the kids are at home all the time:

1. Try and keep some sort of routine in place if at all possible.
I have been getting my children breakfast, dressing them and washing them in the same order as I would on a school day. Once they are fed, changed, dressed and clean I have a much better chance of them settling with toys, or a DVD or an electronic device for ten minutes while I get myself washed and dressed. An uninterrupted shower is a luxury but you would be amazed how you can multitask having a shower while also supervising a child brushing their teeth. Thankfully my two are still young enough to not worry about privacy too much. And I do have the advantage that one can’t tell anyone anyway 🙂

2. Don’t feel you have to go everywhere just because you have been invited or there is something special on.
My children have a habit of waking through the night or getting up at 4 o’clock to start the day. By midday they can be tired, grumpy and very unsociable so I try not to commit to many events and go with how the kids are. Busy noisy places are very difficult for both my children to cope with so I thank people for their invites and say we will come if we can. The stress of feeling we have to go is too much for me and then the children feed off that stress. They need time to transition from one place to another and ideally they need to know where we are going beforehand. My daughters anxiety means that just turning up somewhere we haven’t been before would have her very distressed and confused. I may not be at your event but we still love you and I am grateful you invited me.

3. Only do the essentials of the housework while the kids are at home.
Sometimes we have to move house or do repairs while the children are off but if it can wait, let it wait. Trying to make my house into a show room while my children are at home is fruitless and way too stressful. They need clean clothes, clean plates to eat off, a clean floor to play on and a bathroom that is tidy and useable. When they return to full time education I can clear out their toys, redecorate and give the garage a good clear out. Trying to do these with two children at home with high care needs is asking for a disaster. If you missed the five minutes in the morning when my living room was tidy then I apologise. I tidy up at night enough to find the sofa and floor and put my feet up before falling asleep. By 6 am the train track will be back on the floor again for another day of playing with Thomas. One day I will look back with fondness at these times even if at times the clutter of children seems t be screaming at me to get tidied away.

4. Kids appreciate the simple things.
Theme parks, soft play centres, farm parks and expensive garden toys are all wonderful. But someday the children just want to spend time with you. Only one of my children can kick a ball, but the other can lift it up and walk away with it. We have had so much fun in the garden and in local secure parks with a simple ball. Both my two would also happily play in local parks being pushed on the baby swings for hours and going for walks. My son would flap at the bushes all day if I let him. Few of us can afford to take the children to expensive places all summer so I have been balancing trips out with time at home. We have been blessed so far with wonderful weather so parks have become a firm favourite. We have also loved the fact that the sun has made soft play much more accessible as it means the centres indoors are so much quieter. Some centres have even put on special offers to attract customers during the warm weather. We also found out that children travel free by train locally so we have had some lovely train trips. It hasn’t been about the destination for the children but in fact the journey itself.

5. Make home fun.
My daughter had a nose bleed last week and we had loads of bedding to wash and change. Both my children found it hilarious to watch me put on a duvet cover. So I went with it and made it into a game. My son then found some towels drying on a bannister and dropped them down the stairs. For him it was such a fun game. There really is no point trying to explain how this makes more washing and could cause someone to have an accident. He has no understanding of all that. So I went with the moment and had great fun with some towels. Simple childhood fun. If the train tracks are out I am down on the floor playing and interacting with them. If you can’t beat them…join them!

6. Internet and evening shopping is the way forward.
I am blessed to have a husband and although during the day it often takes two of us just to meet the children’s needs, once asleep it only needs one person at home. So I rejoice in 24 hour supermarkets and online deliveries. Trying to drag two 5 year olds around a supermarket is worse than pulling teeth. And sadly food won’t just appear in my kitchen. So we have adapted to work around it. It may not be our ideal but it is just for the holidays. I never thought before I had children that I would say a supermarket at 10pm was a luxurious break. Believe me, during the holidays it is!

7. Choose your battles.
I do this all year round but more so in the summer. My son will only wear his school jumper so why fight. The days are long enough and the nights too short for me to battle needlessly. If my daughter wants a chocolate spread sandwich for breakfast I rejoice she is eating. If it means I can cook a dinner then they can have some time on electronic devices or some TV. Seven weeks of non stop battles would drive us all crazy.

8. Take help and let your children go to friends houses.
If you have other children in addition to your special needs child and they are old enough to do so, let them have some independence. Children, like adults need social interaction. There is nothing wrong in letting friends have your kids for a short while or letting a family member take one out for the day. The holidays are long so take respite when you can. I fought hard to get my son a few days in a play club for children with additional needs. He needed the break and so did we. I missed him dearly when he was gone but we all benefitted from a few hours apart. If someone can give you a night away from the kids don’t let them change their minds. If you have a partner try and take turns if possible. If you are offered care packages, kids clubs or such like use them as much as you can. You are not a bad parent for needing to be without your children. I still struggle with this but I am slowly getting there.

9. Never be ashamed or embarrassed about taking your children out.
My skin is getting thicker this holiday. I hear comments made about my children all the time, from adults and from other children. The more we are out in public and the more other people are out the more obvious it is how different my children are. It breaks my heart how isolated parents of special needs children feel, especially during the summer months. They feel they can not invite other children around to play, or feel trapped in the house because of their child’s needs or feel excluded. My children have as much right to play as other children. Whatever my children’s difficulties they are still children who want to run around a park, be pushed in swings or go on trains. This summer I have taken them more places than ever before even though their difficulties are more obvious. They need to experience more in life and the world needs to see more children like mine to break down ignorance. Yes, people will be cruel but smile, laugh and perhaps pass ancard explaining your child’s condition. They might not change their views but you would be amazed how much more love there is out there than hate.

10. Keep doing what works.
My son is addicted to you tube videos of life doors opening and closing. If it keeps him occupied and happy then I am happy for him to have some time watching them. He uses photographs from the iPad to communicate his needs in a similar way to how he uses photographs at school. If it works in school then I am keeping that up at home. It keeps things consistent and it allows me to know what he wants, at least some of the time. Likewise we are using the ‘first/then’ strategy to get him to do things he finds more challenging. First shoes on then out in the garden is a good example. For my daughter we found allowing her to eat away from her brother (whose table manners would put anyone off eating) has helped her eating. Likewise at times we use TV and dvd’s to allow us to put a washing on or cook a meal. If it works for you, do it!

Seven weeks is a long time to live off very little sleep, entertain two children and meet their needs at the same time. But half way through we are surviving and having fun doing the strangest of things, like changing beds and tipping out water. It’s about survival. It’s about keeping your sanity. But it is also about enjoying your children whatever their difficulties and challenges. I would love to hear your top tips for surviving the holidays with your special children too.

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I guess we should check out that carers table then

20140610-233824-85104750.jpgAnother afternoon spent at hospital with my 5-year-old. Another trip to the eye clinic. We are on first name terms with the lady at the desk now. She doesn’t even look at the name on the appointment card as we hand it to her. She ticks my son’s name off on the list without even giving it a second though. He’s become a ‘regular’ now.

We are well versed in the hospital and clinic drill. We know when parking is going to be an issue and drive straight past the visitor car park and right into the overflow one without the previous six circles around looking for a space we used to do. We have long stopped looking at the signposts directing people to wards, clinics and hand washes. So this time we think we can risk taking the 5-year-old in without his mobility buggy. He knows the drill now. And despite hospitals apparently being one of the most disabled friendly places around, believe it or not, the chairs in the clinic are all nailed to the floor in rigid rows with no space for wheelchairs or buggies of any sort! My son can walk, physically anyway, and he is able to sit on a seat. So it has to be easier if we walk him in.

As he flaps and vocalised towards the front door I suddenly realised we had our first problem: automatic doors! Isaac loves them and is never content to just open them once…or twice…or forty times. He could happily be entertained by them all day and all night. The clinic is on the ground level so there is no enticing him along using a lift as an incentive. Not that he would get in the lift anyway. No, he would just want to watch the doors open and close all day there too.

I ended up carrying him. He is two-thirds of my height now and almost a third of my body weight. And if he does not want to go somewhere…well he won’t make carrying easy! What was I thinking leaving that buggy in the car? We arrived at the clinic exhausted before we even started.

I should have guessed it was going to be one of ‘those’ appointments. You know, the ones you think seem never-ending. The ones where the clock on the wall forgets to move and everyone else leaves when you seem stuck to the seat. Yes, those ones. Isaac sat hammering on the sponge seat back laughing at the noise. At least he seemed happy enough. He had to be carried into the first room. They tried and failed to get his attention. Until they put those dreaded drops in that is. Non verbal does not mean compliant! We had a choice of waiting in a boring waiting room for half an hour with a five-year old with complex needs who now had stinging eyes and blurred vision or we could leave the clinic and return in 30 minutes. Moving the car was not an option or it would take longer than the 30 minutes to find another parking space. Isaac had his own plans. He ran straight back to those automatic doors again!

Watching him flapping, clapping and spinning at those doors and gradually getting more and more confused as he could no longer make out the exact point of them opening and closing due to his vision slowly failing, made me suddenly realise that I was no longer just a parent to this boy. I had long passed that point. I was now his mummy and his full-time carer at the same time. He was my son, yes, but he was also in need of much more care than any ordinary child his age. Though his eyes were struggling, mine could see clearly. This was a child with needs so severe he will need life long care. I was so relaxed in this hospital setting from so many visits that it seemed like home.

My husband walked over and said he had noticed a table with some people at it. We had walked right past it. So preoccupied were we with watching out for the needs of our son, that ironically we had walked right past a table of leaflets and handouts for carers!

Are we parents or are we carers? Or can we be both?

We have two children registered disabled. My diary is full of appointments for hospitals, clinics, home visits, and meetings. I spend my week carrying out speech therapy, play therapy, writing social stories, making visuals and making sure we have mashed potato in. Both my children have teams of professionals involved in their care and support. I am still changing nappies on 5 year olds. 20 minutes ago I just had to carry my child kicking and screaming down a hospital corridor because he refused to leave the automatic doors.

I guess we should check out the carers table then.

Society may not see me as anything more than a mummy. Until recently I would have seen myself as more of a mum than a carer too. I look after my children because I love them, like all mums do.

But very few five-year olds still need to be changed like a baby. Very few five-year olds have no speech. Few five-year olds have the complex medical and developmental needs of my son, or the high anxiety of my daughter. Thankfully not many five-year olds require teams of professionals to support them everyday.

Isaac was given glasses this week. Lots of five-year olds have glasses. But for me this was the final thing that made me realise I have definitely moved from just being mum to my children to also being their carers.

It was amazing how many people checked out that carers table. Today I was one of them.

A trip to the eye clinic for my son has helped him see clearer. But it also helped me see clearer too.

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I’m still here, and I still love you

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Though you have just this minute screamed so loud in my ear that my entire head is ringing. I still love you. Though you have laid on the floor hitting your head in anger and frustration, throwing everything in sight about, I still love you. When you bang the table and spin your dinner plate in annoyance because I am not cooking your dinner fast enough, I still love you. When I lifted you to safety because you were about to walk head first into the corner of the kitchen work top and you rewarded me by biting me. Even in that moment, when the pain went right through me, I never stopped loving you. When you wake me up screaming and making noise in the smallest of the small hours through the night and I find myself getting frustrated and exhausted. When I roll you over, whisper in your ear quietly and give you your dummy once again because I know you need to try and sleep. Even in the middle of the night I’m still here. And I love you. I love you in all your pain, in all your frustrations, in all your laughter and in all your flapping and chest beating. I love your quirky ways and sense of humour. Even when it seemed, during the 276 days you solidly and religiously only wore your school jumper every day (yes even on Christmas day) I was sighing inwardly. I love how you thought it so funny to wear a blue top, just like that, after so long, only to go right back to only wearing that same red jumper again every single day. Even when I could cry, or I walk away to gather my patience once again. Even when I put you on the naughty step or take you to your room, even when I tell you ‘finished’ and ‘no’, even when it seems like I am the last person you feel cares, right then, I’m still here. And I still love you.

When you stamp your feet at me, shout at me and demand of me, and I tell you off for being rude or cheeky. Right there, at that moment when you want to walk right away from me and never talk to me again, right at that precise moment, I still love you. When you play with your toys and accidentally smash my favourite mug, or spill hot tea everywhere, or pull the toy right at the bottom of the pile knocking boxes of various things flying across the room. When my mouth says ‘stop that right now’ or ‘that’s it’ or ‘I’ve had enough’, my heart is still full of love even when my emotions get the better of me. When you wake up in the middle of the night from a scary dream and you call out my name. It doesn’t matter if I am not right there in your room. I am still here, and I still love you. When things are tough at nursery, when you just can’t seem to speak or work through your anxieties, when your one and only friend is not in that day and your heart sinks, I might not be holding your hand, but I am right there. When the dentist visits again and you instantly have flashbacks to the trauma of having your teeth coated with fluoride and how the very taste made you vomit because you could not bring yourself to spit out the excess stuff, I am right there. I have gone before you and prepared a way out. When I know it will just be too much for you I ticked that box that said ‘I do not wish my child to take part’. Because I love you. And I know how much you can bare. When I ask you to be quiet in full conversation because the phone just rang and you get frustrated because you didn’t get to finish what you wanted to say, when I push you to try on pants again when you would rather stay in nappies, when I get you to try and dress yourself when you would prefer I did it for you, it is all because I care. When you are struggling to pull those trousers and pants up when you have just sat in the toilet and you feel I have left you alone in your embarrassment and shame, I haven’t. I am watching, praying, pushing, stretching you and helping. I’m still here. And I love you. In the tears and the frustrations, in the moments you want to be alone, in the moments you are afraid or worried, in the moments of excitement and laughter, in all of those and more, I’m still here.

When the silence isn’t because we are a peace but rather because words have got lost in the stress of another long day. When you are leaving out one door as I am coming in from the other. When you can’t see any joy in the week through the stream of appointments and commitments. When the sum total of our kisses seem to be a quick peck on the cheek. When night and day become a non stop blur that never seems to end and intimacy is pulling the duvet closer around you. When the flame of love is a spark barely still flickering. When you have tripped over one stray toy too many, heard the same clip of dvd so often you are tempted to see if the dvd can be fried for lunch one day, and there is no longer any laughter at the dinner table. When you are still clearing away the dishes from the previous meal whilst I am cooking the next one. When you drive the car to get groceries and you are temped to sit in the car park for half an hour before going in just to get time on your own. When you have a head ache that has gone on so long you start to forget what it is like to no longer have one. When the only hand you hold is a young child’s to help them down the stairs when once you used to hold hands with your best friend and lover. When you dread the school holidays because you just don’t know what to do with the kids anymore. When your child wants pushed on the swing for so long you start to lose feeling in your arm and your chin is growing a beard while you stand there. When it seems hope is lost, the clouds will never move and the hill will never be conquered. In all those times I am still there. Still praying. Still holding on. Still loving you. We will get through this.

When you have given up on me. When you think all is lost. When hope seems a distant memory. When you sit in the middle of the floor when the children have gone to bed and the tears won’t stop. When your heart aches just to be close to someone. When you think you just can’t face another day…don’t despair my child. I know it is hard. I know some days you just feel so alone. But I need you to remember something, my precious one: I’m still here. And I still love you.

“Because you are precious in my eyes, …and I love you…for I am with you.” Isaiah 43:4-5
“And surely I am with you always, to the very end of the age.” Matt 28:20
“The steadfast love of the Lord never ceases” Lam 3:22