The effect on me…

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Having children affects everyone. You become less focussed on yourself and more focussed on another. You sleep less, go out a lot less and consider it a great achievement to get a shower without interruption. But as time passes the children slowly become more independent and confident and you little by little gain more of yourself back again.

Well that is how it works when you have typical developing children anyway. But what if that very needy, all-consuming, up through the night, needing a huge amount of time stage never ends?

It is well documented that parents of very young children are vulnerable and prone to depression, mental illness, and can easily become socially isolated. Health professionals are trained to look out for this and regularly check for signs that all is not well as research has shown that sleep deprivation and coping with the high demands of a baby or young child take a huge toll on parents.

But it is expected that season will pass as the child grows.

But for some, like myself, that season just keeps going on. And not because I went on to have another child either. It is because almost seven years after having my babies I still face the high demands, the daily intimate care needs, the lack of sleep and the stress of milestones not being met. My children have disabilities and the pressure parents of very young babies face is still very much the same as what I face daily. I still change nappies, I wash my children and dress them, I am still singing nursery rhymes and trying to teach one to say ‘mama’ or ‘dada’, I am still cutting food up and putting socks on that have been pulled off.

And that long-term intensity has to have an effect on me.image

It takes it’s toll mentally in that some days I could just sit and cry. The doctor could give me tablets but the pain and stress would still be there. Some days the effort to get dressed and get out the house just seems too much. Except unlike parents of babies who don’t have to leave the house and can go back to bed, my children have school to get to even if one of them still only functions at the level of a 1-year-old.

It takes it’s toll socially in that going out at night is impossible. Besides the fact I have huge caring responsibilities and am permanently exhausted, baby sitters are a rarity for families like mine. Who has the physical ability to carry a large six-year-old out of a bath and dry him and dress him? Who has the emotional strength to deal with a little one having a panic attack because her mum has left the house? Even if I did find that special someone I have no motivation to get dressed up and make myself presentable when my body just craves sleep.

It takes it’s toll physically. The lifting and carrying of a baby can make a mum’s arms ache but when the ‘baby’ is two thirds of your height and a quarter of your weight how do you manage? Seeing to personal needs of a toddler who decides to crawl away is a challenge. Seeing to the personal needs of a child who can bite, punch, kick and climb is an altogether harder challenge. When they are long past the age of using a baby change in public and you have to find a way to meet those needs in public toilets not build for that purpose your body aches and bends in ways you never thought possible.

It takes it’s toll financially. Babies cost. I often hear parents complaining at the cost of essential items like prams, car seats, cots and nappies. Second hand is sometimes an option though. But not when you enter the ‘special needs’ market and you have to look for elastic waisted soft trousers for a child who can not dress himself yet aged 6. Or you have to think about paying for private therapies not available on the NHS. Then there is the cost of hospital trips, the fact the schools are miles away from home and special needs sensory toys come at a huge cost. And I still have to buy wipes, and bedding and nappies and other ‘baby’ items six years on.

It just all takes it’s toll on me.

The days of people ‘popping by’ to see if I am ok has long passed. The excitement of coming to see those new babies has long gone. The phone calls from friends to hear how the babies are stopped many years ago. Yet the reality of my life never changed much.

Yes, my children have changed me for the better, but full-time caring for a disabled child takes it’s toll.

Please, if you know someone who has a child with any sort of disability, think about and do what you can to help the child. But have a think what you could do to help mum or dad too. Believe me they need support more than you may ever realise.

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When everyone wants a piece of you

Another day. Another appointment. Another night of being woken through the night. More phone calls. More screaming. More bodily waste to clean up. More pressure. Never-ending stress.

Every parent gets stressed. Everyone needs a break at times from the 24-7 demands of raising children. But sometimes the added pressure of having children with additional support needs just becomes overwhelming when the days and nights become one, the paperwork piles up and everyone wants a piece of you.

What do you do when a professional calls you and you need to take the call yet your child needs your urgent attention at the same time (I could list any number of things they could be doing here like smearing faeces, climbing in a bath of water fully clothed, feeding the fish a tub of sudacream, eating frozen food from the freezer or escaping out of a window or door)? What do you do when you HAVE to find the time to complete urgent paperwork but your eyes can barely stay open and your mind can not focus due to exhaustion? How do you explain to a child with very limited understanding that their routine needs to change to go to yet another hospital or clinic appointment? What do you do when one professional says one thing and another disagrees and you are caught in the middle? How do you cope when mealtimes make you cry because your child just won’t eat and the other one just won’t stop eating? How do you remain at peace when your child comes home from school wearing clothes for the opposite sex because yet again he has gone through four pairs of trousers in a school day even whilst wearing nappies?

Everyone wants a piece of me.

I am expected to turn up at meetings and act professionally even when at times my heart is breaking. Crying is meant to be reserved for the privacy of your own home and only makes professionals question your mental stability if seen in public.

I am expected to follow through programmes designed by professionals who think they know my child better than me and who think I have nothing to do other than run with their latest plan.

I am expected to answer phone calls and emails in a timely, professional manner as if working in an office environment while the washing machine is spinning in the background, the children have technology at full blast (what other volume is there?) and the window cleaner is knocking my door asking for money.

I am expected to turn up to the right appointment, at the right day and time, with the right child, focussed, prepared and calm with a child who is alert, receptive and willing to participate in whatever therapy they are having today. And all this with a smile on my face and an enthusiasm for the programme.

I am expected to do homework with my children, take them to activities to ‘broaden their horizons and stimulate their interests’, give them a healthy diet and exercise, nurture their talents and spend quality time with them, when in reality we spend our evenings making chicken nuggets for tea again, watching the same programme on TV for the fiftieth time and coping with screaming children, toys and technology being thrown across the room and being physically attacked because I dared to run them a bath!

Schools expect me to jump at the first mention of ‘parent involvement’, hospitals expect me to fly my children to appointments (well they certainly don’t expect me to park given the lack of spaces they provide!), social workers expect to come to a house that is well run, clean, yet homely and comfortable, and my children need me to hold them, love them and help them all the time.

Yesterday I had one meal. It was one of those days. And the fact is I am not alone. There are so many parents in the same situation. Living with stress that is incredibly high, balancing meetings, appointments, therapies, professionals, children and the demands of running a home whist caring 24/7. Because despite the volume of people involved with my children it will still be me tonight who cooks them both tea, has clean clothes for them to wear to school tomorrow, reads them the bedtime story and kisses them goodnight. It will still be me who lies with them through the night while they cough or cry or scream.

It is me who knows them, protects them, loves them.

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Everyone wants a piece of me. But these two have a piece that no-one else can ever have. They have my heart. Every other piece of me can just wait while I take a moment to hold them. The phone can keep ringing, the post can wait a moment and the emails can stay unread just a little while longer. Whoever else wants or needs me these two always come first.

When the invisible disability becomes visible

imageSomething has changed quite recently. Something simple, yet from societies point of view, something quite life changing.

It isn’t my son. His needs and difficulties are exactly the same as what they were yesterday. He still can’t speak and has limited communication. He still has global developmental delay and learning difficulties. He is still doubly incontinent and vision impaired. He very much still has autism. His genetic condition (neurofibromatosis type 1) hasn’t miraculously disappeared. He needs full support to meet his every need. But something quite fundamental has changed for him.

For the first time his invisible disabilities have become visible.

He has always flapped in public. And screamed. Those just generated stares and cheeky remarks.

He has always made strange noises and avoided eye contact. They have just made people look the other way and pretend they don’t notice him.

We have used disabled toilets now for some time. I think some people think I am someone very special because I pull a key out my pocket to open the locked doors.

We park in disabled parking spaces and display a ‘blue badge’. But still we get questioned and accused because we lifted a child out the car who then proceeded to walk to where we were going. Why does society only think you are disabled if you physically can’t walk?

We have endured awful comments, hurtful stares and had many people avoid us when our son has been in obvious distress over sensory overload or frustration due to communication difficulties.

We have had to live with the fact our son did not ‘look’ disabled so according to most people that meant he couldn’t be disabled. It was frustrating, distressing and hurtful.

But now that has all of a sudden changed. His invisible disability is now blatantly obvious. And the difference in the public attitude is incredible.

We have just been given a wheelchair for Isaac.

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So suddenly people are smiling at his flapping, they find his noises endearing and cute, they even open the door to the disabled toilets to help me in. They no longer have issue with me parking in a disabled bay because they see a wheelchair coming out of the back of the car and a child lifted into it. Strangers are coming up and talking to us like we are no longer contagious. When my son screams, rocks and bites himself people are wanting to help and asking what they can do to assist instead or avoiding, talking about us behind our backs, or staring at us in disgust.

When we take him to appointments now people are going out of their way to help and support. Even medical professionals seem to take thing a little more seriously. People are listening, respecting and supporting where before these were all major challenges.

All we did was sit him in a chair with wheels. But it shifted things.

They told me having a wheelchair would be life changing. I certainly would agree with that. A simple chair with wheels and handles has made life more pleasant, more manageable, and much safer. I was expecting it would be major for us.I just never realised how major it would be to everyone else.

When the invisible disability suddenly becomes visible we change how we behave. I viewed my son as disabled but now because of a simple wheelchair others see him as disabled too. The thing is he is just the same Isaac he was before. The only thing that changed was a set of wheels.

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I tried to find myself and realised I was lost

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When you have children you expect it to be all consuming…for a season. It comes with the territory to have more nights in than nights out, to swap posh restaurants for McDonald’s and to exchange studying for homework with the children. The pre-school years are supposed to be difficult, tiring and challenging. But the light at the end of the tunnel is that one day soon they will go to school and you will start to get your life back…at least to a degree. And as they go to high school and later college or university and gain more and more independence, so as a parent you get more and more ‘me’ time to restore the balance in your life.

But sometimes the child you gave birth to, held in your arms and sang nursery rhymes to, just isn’t developing like they should. And one day you realise the likelihood of them living independently, marrying or holding down a full-time job is a reality not entirely guaranteed.

I love my children, but I found the pre-school years of raising my twins very challenging, physically as well as emotionally. Somewhere during that season I lost myself.

I lost my excitement in the continuous nappy changes (which are still ongoing).
I lost my spark in the hours of never-ending sleepless nights. (Still having those too!)
I lost my enthusiasm in the cooking, cleaning, bathing and caring for two growing children who required so much attention. (Still doing all that too!)
I lost my heart in the discovery that both my babies had autism.
I lost my hope in finding out my child had an inherited genetic condition causing him to grow tumours throughout his body.
I lost countless tears trying to teach my child to speak (He is still not speaking)
I lost friends when we realised our lives were going in different directions and I could not join in the parenting boasting game.
I lost sleep worrying how my children would ever catch up with others and survive in school.
I lost my pride begging for help when it seemed overwhelming.
I lost my strength in the never-ending battles for support.

Caring becamee all-encompassing. Autism became a way of life. When the day came and my children finally started school I was sat writing social stories, printing out visuals, finding games to support them or researching online to help them. And when I wasn’t focussed on my own children I was supporting other families in the same situation. I had redefined ‘me’. I lost myself in my children and their needs. I lost part of me to autism.

A friend asked me recently how I was enjoying my free time now both my children were both at school. I had to think twice about what free time even was!

I thought my children were lost in the world of autism. It turns out I have been trying to find myself recently and realised I am just as lost as they are, if not more.

There is more to me than being a carer. There is more to me that being an autism parent. For my own sanity and mental health I need to find who I am again. Did you know you can be a wonderful parent, a great carer and even a warrior autism mum and still do something else besides look after your children full-time? In fact I am sure the more I actually find myself the better I will be at the rest of it all.

I have gained so much as a person, a mother, a wife and a friend these last few years. Raising two children with autism is making me stronger, more confident, more out-going and more aware of others. I have become resourceful, educated, thick-skinned and bolder. I cry more but I also celebrate more. I have learnt to listen when there are no words to hear and pray like I have never prayed before. I am a different ‘me’ to the one I was six years ago.

I tried to find myself recently and I thought I was lost. It turns out I have just been cocooned in a world of caring, disability, the high support needs of my children and everything else that has entailed. It is now time to take hold of all I have gained and rediscover me.

I want to thank these two for making me a better ”me’ than I ever thought I could be.

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They just sat there holding hands

The long summer holidays were coming to an end, it was getting ever closer to the children’s bedtimes and they were having a little time on technology while I tidied up. They were quiet so I turned around to check on them to see them engrossed in their own worlds but yet so closely bonded in each other’s worlds they were sitting holding hands. It was one of those moments you just had to be there. It was sweet, intimate and special. It was beautiful:

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They didn’t need words (which was perfect since one of them is yet to speak) and they didn’t need to look at each other (even better since they both have autism). A powerful image of two people connected against all odds. A moment of love.

I have had five years and nine months to look at their hands. I remember when their hands were so tiny they could curl round a single finger of mine. I remember holding their tiny hands in a gentle fist while I slipped their arms into little baby grows and cardigans. I remember holding their hands when they needed me to balance them as they took their first steps. I remember gripping their little hands as I showed them how to climb stairs, holding their hands as we walked in shops, climbed up hills or along paths. This week I will take one of those precious hands and hold it as I walk my daughter to school for the first time. Precious moments of love, guidance, bonding and closeness. I know one day she won’t want her mummy holding her hand but until that days comes I treasure that intimacy with her.

One of these little hands will learn to write soon. But while her brother may not do this for a long time to come it doesn’t stop them being close. Summer has brought them so much closer to each other. It has given them more shared experiences together and time in each other’s company. They prefer to be together. Education is separating them but love is joining them.

And while one of these little hands will turn pages in a book, paint pictures, thread beads and cut and stick things the other hand is still be used as an essential means of communicating. It is only in the last year that my son has leant to use his hand to point. I still dream that one day he may use his hand to blow me kisses, or wave, or stroke my face. But right now I rejoice he still uses his hand to take mine to what he wants.

Therapists want my son to take my hand less and use other means of communicating. While I see the advantage to this there is something so special about a little child leading you by the hand to show you what he wants. It connects you physically when there is no language. It tells me he loves me without any words leaving his mouth. And as he uses photos and pointing more I miss those moments when he sought me out, pulled at my hand and led me to what he wanted.

I may not always be around for these children, though I pray God sustains my years on earth for many years to come. But seeing them together, knowing that despite all their challenges they have a deep love for one another, that from the moment they were conceived they have been connected. Seeing my daughter put her hand over her brothers to teach him what to do in a new game, watching how she holds a straw in a glass of juice for him to help him have a drink, observing how she tenderly strokes his arm when he gets upset…I just know that they will always have a friend in each other.

I wanted to kiss them both, explain how special this moment was to them, talk to them about the significance of what they were doing… Instead I smiled at them and took a photograph… While they just sat there holding hands.image

It’s not about me

When I was young it was all about me. And then one day I got married. And it became about me and my husband. It stayed like that for far longer than it ever should have been, but then we became parents. And life no longer became about us but about two little children. For five years life has now been all about them. Even more so than many other parents as both my children have additional needs. They both have autism. One also has seizures, global developmental delay, neurofibromatosis type 1 and is vision impaired. No-one would judge us for it being all about them. Hospital appointments, school and nursery events to attend, therapists to liaise with, courses to attend, medications to be administered, nappies to be changed and so on. It could so easily be us four and no more.

But life is bigger than that.

So I open my life up to others. I am on social media outlets, I attend groups and courses and meet other families going through some of the same things we are. I take the children to clubs for other children with autism. I blog.

Why?

Because I care about others. I can learn so much from the road that others have walked before me. As a family we have negotiated some tricky terrain that has only been possible through the help and advice that others have given. Together we are stronger. Our breakthroughs become others breakthroughs and give others hope. Hearing other families achieve in areas we are still struggling with gives me hope that all things are possible. Even if I can not directly identify with thier issue or offer advice I can cheer them on, celebrate with them, encourage them. We can pray for each other, stand beside each other, link arms.

Because it isn’t about me.

Or my children really.

I could easily close my social medai accounts, stay at home with my children, not answer the telephone, stop blogging. But I would suffer. And I believe others would too. Not because I think I am someone special. But because there is something powerful and stronger about supporting others, praying for other people, looking out for someone other than yourself.

I am a people person. I comment on social media because I care. I listen to your struggles because I care. I blog because I care that someone might no longer feel alone after reading my blog. That someone may be helped by a strategy or therapy that helped one of my children. That some other family might identify with what we are going through and be encouraged.

It’s not about me.

So I am happy for the National Autistic Society to use us on their website (http://www.autism.org.uk/) The boy with the bubbles is Isaac.

And I am happy for our story to be used in their Christmas marketing:

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It’s not about me.

It’s about how many other families that will be able to access the help we did as a result of campaigns like this.

It’s about someone else knowing they are not alone in this journey.

It’s about encouraging others that progress can and will come in time.

Sharing your story is not about you. It’s about humility and vulnerability. It’s about giving of yourself, even when emotions are raw, knowing you are not alone. It’s about real life and daily struggles. It’s the public recording of a journey. A journey that others can adopt as thier own, identify with, run with, be encouraged by. It’s about awareness.

It’s about helping just one person.

The sleepless nights, the endless screaming, the loss of the one word he took over 4 years to say, the yearning to see my babies walk, the pain of seeing my son have seizures, the broken heartedness of getting diagnosis after diagnosis, the fighting for thier educational needs, the public comments that crush my Spirit, the constant appointments.

It’s all worth it.

Because these two are worth it:

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You are worth it.

Your children are worth it.

If one person is encouraged by this blog it is worth it.

We don’t all have to live our lives in public to help someone else. We don’t even have to be on social media. But someone somewhere can benefit from the journey you have walked. Someone can benefit from your friendship, your encouragement, your prayers. Someone can feel less alone just by knowing you care. Someone’s life can be changed by you.

It’s not about me.

It’s not really about autism.

It’s about parenting.

It’s about others helping me and me helping others and being there for each other.

It’s about awareness.

It’s about not feeling alone or isolated anymore.

It’s about rejoicing with others as they rejoice with me.

It’s about walking beside each other hand in hand.

It started with two little children but now it’s about hundreds of others.

It’s about so many other things. But it’s definitely not about ME!

“not looking to your own interests, but each of you to the interests of others” Phil 2:14

“rejoice with those who rejoice, mourn with those who mourn” Rom 12:15

“But encourage one another daily, as long as it is called ‘today’…Heb 3:13

When someone knows your name

It takes just one person to make a difference. Someone to care, someone to action something, someone to notice. When someone knows your name it changes things. And what can seem a little thing can often have major significance. Just because someone knew your name and was willing to care.

Take this week for example:

Safety adaptations at last!

We have been pushing for some safety adaptions to our house for almost a year now. Little adaptions that could make a huge difference to our quality of life with two disabled children. It felt like we were getting nowhere until one person came to see us this week. This professional has been working with my family for months now doing home visits and spending a lot of time working with us to help us. She works for the social work department but isn’t a social worker. She noticed a record on our file that said ‘mum seems to have hurt her knee’ and so she was expecting a little graze and nothing more. Not crutches and a knee splint and trips to the local hospital. She left promising so much. And it happened! Within two days we had someone out doing this to the front of our house:

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And it is making a huge difference. To me, to Isaac, to Naomi. Even when the knee injury is long forgotten and the children are grown up these railings could still be there. As a sign someone knew my name and was willing to do something to help. It really doesn’t take much to touch another life.

Speech therapy finally!

Then there is the speech therapy story about Naomi. Naomi’s name was first known to speech therapy in March last year when she was referred by her paediatrician. They agreed to put her on the autism pathway and refer her for diagnosis but having seen her in a clinic session just once she was then suspected of having selective mutism. So her name got forgotten. It became an anxiety issue rather than a speech issue and her name was no longer an active case. No-one seemed to know about her anymore. She might have had an annual review but as the therapist was about to go on maternity leave it would depend on her name and case being transferred. And then we moved house. So we applied again for speech therapy as we were now in another town. We waiting until her name reached the top of the waiting list and then we recieved a call from a therapist. It was a thorough call, but at the end of 45 minutes her name was still not getting put forward for therapy. I still felt they could help, nursery felt they could help and her educational psychologist wanted them to help. But with the thoughts of selective muteness still there their hands were tied. I continued to fight and push for the service but I was getting nowhere.

Meanwhile the original therapist had her baby. And time passed. Her baby moved onto solid food, leant to sit up and crawl and even said his first word…while my 4 year old still had no confidence to speak in nursery. But then something amazing happened. The therapist returned from maternity and on going through her files came across my daughter’s name. She went that extra mile and through detective work managed to get our new phone number and called me for an update. She knew my daughter’s name! Do you have any idea how amazing it feels when someone remembers you? And wants to help. So we had a phone discussion and I became quite emotional. Because this is my daughter and I know she needs support. Because I had been fighting so long for something that I was beginning to think might never happen. And all of a sudden someone remembered her name. So Naomi’s notes will now be transferred over with a covering letter saying she should be fast tracked for therapy as soon as a therapist become available. Never give up fighting. Never stop praying for breakthrough.

Junk mail will never be the same again

You can tell junk mail straight away. Why? Because they don’t know your name! And like most people, we get our fair share of ‘junk’ put through our door. This week we had a catalogue delivered. The kind old people usually get (perhpas those adaptations we had done might work against us here) that would usually only get filled in that round filing cabinet also known as a recycle bin. But on my way to the bin the phone went and I temporarily placed the brochure on the coffee table. My son has been eternally grateful for that call. Because I forgot all about that magazine until he came home from school. And he spotted it. And he certainly never thought it was junk in any way! The magazine in question was from a home delivery company specialising in prepared meals delivered to your door. The prices were immaterial to my non verbal autistic son but the bright, colourful, mouth watering pictures of the meals were like heaven to him. Nothing I could have bought him from any toy shop or book shop would ever be of so much interest to him than this item of mail. He turned the pages one by one (a very recently acquired skill) looking at every picture

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and when he found one that really interested him he flapped and became vocal:

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and he even allowed it to be a shared experience. There was something so beautiful about this moment when he took dads hand and placed it over the pictures he wanted to share with dad. He has only ever did this with mum before. He rarely lets us into his world. Shared moments like this are rare and therefore treasured.

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That book went to bed with him, went to school with him and even came to church with us. But we knew it would eventually get ripped and we would have a distraught child. So dad emailed the company and asked them if we could have any old brochures and what our son had done with their catalogue. Until then the company never knew our names, or anything about us. We were a number, a random house to deliver to, just a potential customer among many hundreds.

They have since called us and emailed us. And they have prepared a ‘goody bag’ for my son. His name has been the talk of their office this week. They have even offered to send samples of food to his special needs school. Ok, so the cynics reading this might just think they have found a new business venture. Or they might actually feel that they could make a difference.

But to me it is special however you look at it.

It takes just one person to make a difference. Someone to care, someone to action something, someone to notice. Someone to know your name. We all need people like that in our lives. And we can all be that someone to someone else.

And you know what? God knows your name too.

“Before I was born the Lord called me, from my birth he has made mention of my name” Isaiah 49:2

That is really amazing!