Five Christmas gifts to give to a special needs parent

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I used to think it was only children who were asked in December ‘what would you like for Christmas?‘. It seems as a parent I still get asked this. I tend to answer like most parents do with a simple ‘oh I have everything I need already thanks’ or the soppy mum variation of ‘my kids are all I could ever want and more.’

Both are true to an extent. My life is very full of smiles, blessings, love and joy but as a full time carer for two children with extra needs life is also very full of other things like hospital appointments, meetings, therapy and endless paperwork!

So what would be good Christmas presents for a special needs parent like me?

How about the following:

1. A listening ear.
We all have our own burdens to carry and none of us are without problems in life, yet so often we become so engrossed in our own busyness we forget to take time to listen to others. Giving me your time to just talk while you listen without judgement or trying to ‘fix’ things is one of the greatest gifts I could get all year round. Come visit me at home while we have coffee, or sit with me in the hospital waiting room. I may seem like I am coping but silently I pray for someone who cares enough to listen to my worries and my struggles. If you can’t physically be with me being at the end of a phone or even letting me let off steam via email or message is such a precious gift. You may not be able to wrap up your ears under the tree but if you could loan me them sometimes that would be amazing.

2. A shoulder to cry on.
Some days are just overwhelming. Some mornings by the time I have managed to get the children safely to school I am exhausted and emotional. Lack of sleep, worry for the future and constant battles on behalf of my children become weary. I, like so many other special needs parents, long for a safe and tender place to cry where we feel free and accepted to pour out our hearts. We need that release in order to gain strength to face another day. We need to let the stress come out in our tears knowing there is no shame in showing weakness. Could you be those shoulders? Will you let me cry without question and hand me the tissues without needing to tell me I am over reacting? That would be a gift that can not be measured this Christmas.

3. An encouraging word.
Few people truly realise how negative the world of special needs parenting can be. Forms ask for things your child is unable to do, assessments focus on your child’s shortfalls, teachers comment on how your child is not hitting targets like the others. Hospital appointments bring news that breaks your heart and even the simplest appointments like the dentist are utterly draining. Then add the guilt that your child can’t talk, or walk yet or play like other children. While other children achieve at sports, or drama or art your child excels more at loud outbursts, screaming endlessly or staying awake all night. Encouraging words are few and far between in my world so a little text, or message or a simple smile goes a long long way to helping brighten my day. An unexpected card saying ‘I care’ is like an oasis in a drought. It is beautiful, precious and priceless. You simply can’t give this gift often enough to a special needs parent.

4. Practical help.
I would never expect anyone else to have to see to my children’s personal needs nor do I expect anyone to be up all night long with them. However, there are some small very practical things though that anyone can do for a special needs parent that can make a huge difference. How about holding the door open when you see them pushing a wheelchair? Or holding the lift to save them waiting longer with a distressed child? If you see them carrying a child into a car seat in the supermarket car park why not offer to take their trolley back for them? These small gestures of kindness mean the world to someone who often feels ignored or invisible. Kindness and practical support never ever go unnoticed to a special needs parent and they restore our faith in humanity. Christmas is an ideal time to make a special effort to help the special needs parent as places are busier, louder and more chaotic than usual but remember a little help all year round would never go amiss.

5. Finally be respectful.
It is so easy at this time of year when the weather is awful and time is tight to just park in that disabled space for two minutes while you just nip in for bread. You may never ever think of doing that at any other time but for me as a parent of two disabled children this is a time when I need those spaces even more so. The same with the disabled toilet. I understand this time of year means most public toilets have queues and you don’t mean to upset anyone. However, these facilities are so precious to families like mine and our loved ones need that space and privacy to have their personal needs met by someone else. We don’t have the privilege of being able to wait. Please don’t push that disabled trolley away in your haste to get to the smaller on at the back. Having a soaking wet trolley may be annoying to you but to those of us who rely on specialist seating for our disabled children having an icy, snowy seat prohibits us from going shopping at all. Your thoughts and respect at Christmas mean a lot.

I realise now I do actually want a few things for Christmas this year. I want friendship, time, love and respect and those are not things money can buy, yet they are the most special and perfect gifts any special needs parent could want not just at Christmas but throughout the year.

Could you give me any of these? Do you know a special needs parent who could do with some Christmas magic? Let them know you care today. It could make this Christmas the best one they have ever had.

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This post first appeared here

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How a church changed summer for one special needs family

 

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One email.

That was all it took.

A lot of courage but just one email.

Last summer was so hard and I knew I could not face it again so I swallowed my pride and dropped my Church office a note.

‘Could anyone help me out?…’

They responded quickly. They responded lovingly. They reached out and changed my entire summer.

A few weeks before the schools broke up I was asked to meet with them. They had ideas and I had ideas and we discussed simple ways people, many we hardly knew, could help us through the challenges of seven weeks holiday with two complex needs children.

I suggested perhaps one meal a week that I didn’t have to cook or prepare. They went above and beyond and hand delivered up to three meals a week, some of them arriving still hot and ready to be served. Roast chicken, bolagnaise, curry, home made cakes, puddings, side dishes and sometimes even a starter too! That someone would take the time to buy ingredients, cook a meal and deliver it just for us is truly overwhelming. Every little pea, or grain of rice shared spoke of love in action.

It was suggested that people could sit with my children to allow my husband and myself an hour for a coffee. One hour during the holidays would have been amazing but once again they went one step further and my children looked forward with excitement to the two ‘best babysitters’ who came once a week for a couple of hours whatever the weather. Two hours out of their week but that time to me was like a wave of respite and sanctuary in a stormy ocean. It also had the added bonus that every Sunday my children ran to the two woman, desperate to see them again and connect with them even more. Every minute of time spent together sowing seeds of love that will change both my children and the precious ladies.

imageAnother couple invited me to bring the children to her house one day. Neither of us were to know it would be the hottest day of the summer and the children had a wonderful time in a paddling pool (well my son preferred a plastic crate!) and watering plants. Precious memories for me, the children, but also for the couple who also enjoyed a wonderful day shared with friends. My children were able to be themselves without imagepressure or stress and their needs almost disappeared as quickly as the water did from the paddling pool when my son decided to tip it out! One day; a million memories made.

I mentioned at the meeting that there was one day I could not even begin to face that summer. It was a day I had dreaded for months as I could see no practical solution in sight. I had a very important hospital appointment to attend in a hospital miles from home that would take hours. Due to the treatment I needed it was not possible for the children to attend. The appointment could not be cancelled and I had no idea how I was going to do it. In stepped the church once again with a plan. What did my children like doing? Where was their favourite place to go? What do they like eating? And so, with tears in my eyes, a plan was formed. My non verbal, severely autistic, lift loving son, would get to go on his favourite lift tour on a train to the city with three adults to support him. I would provide nappies, clothes, money and anything else and they would provide the manpower. Meanwhile my autistic, nervous, selective mute daughter would be looked after at home in the comfort of her own surroundings to keep her anxiety at bay. How do you ever replay people for giving you something like that? It would be no exaggeration to call them angels.

imageIn among this I received texts of encouragement, prayers, hugs and someone even delivered nappies that they saw advertised for free on social media and thought about me and my son immediately. In fact I felt so encouraged I began fundraising to build my children a sensory room and with the help of the church all the funds were raised within just four weeks. We are currently building that now.

This summer has been so different to any other. For the first time I have not felt isolated, forgotten or alone. My church changed summer for my special needs family and I can not thank them enough.

Matthew 25:40 (NIV) “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

Never before has a tray of pasta meant so much to me

imageNever before has a tray of pasta meant so much to me

I could so easily write a negative post. Life is anything but a field of roses right now but right in the midst of pain and struggles a little kindness, a hint of love, or even a tray of pasta can change things!

This post is dedicated to the manager of a pizza restaurant local to me. I will be printing out a copy and hand delivering it to her this week.

I need her to know that never before has a tray of pasta meant so much to me.

imageMy children are struggling. I try and disguise that but I can’t. In the last month my son has endured some difficult medical test including 24 hours of wires glued to his head:

And a few weeks later having to have anaesthetic for an MRI to identify where all his tumours are growing inside him.

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For any child these things are a real challenge but when you can not talk, have limited understanding and have a diagnosis of severe autism and neurofibromatosis these things just seem so much harder; for the child and the parents.

As well as this he has had to cope with a change of teacher at school and beginning overnight respite. He has been brave but in turn we have had to deal with some challenging behaviour.

For his twin sister these procedures and the ensuing changes to her schedule have been so upsetting and disorientating. End of term changes at school, a wobbly tooth and her friend being off school have made everything seem so much worse. This all causes one major difficulty: when stressed Naomi stops eating. Really stops eating.

Isaac loves his food. Anything edible is the highlight of his day. Among his many favourite foods are pizza, salad and garlic bread. One of the very few things his twin sister will eat is a certain pasta from a pizza restaurant.

Sometimes as a parent you do what you need to do to survive.

As much as I try to hide it it is very obvious even to a stranger that my children have struggles. Yet in this particular restaurant we always seem to be welcome.

By now you may have guessed what happened. My daughter broke her self imposed stress related fast and picked at her favourite pasta. As I took her brother up to the buffet the manager spoke to me with a smile and said she noticed my daughter only ever ate the pasta so she would go put more on ready for if she she wanted it. I wanted to hug her.

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Never before has a tray of pasta meant so much to me.

I had to say something because by now I was emotional. I sort of whispered that Naomi has autism and loves the pasta and thanked her for her kindness.

I thought nothing more of it until I went to pay and the manager said she had something for me. She handed me a bag with an entire tray of the pasta in!

She had no idea of our story. She had no idea the stress we had all been through and the daily struggles we face. She had no idea that that pasta was pretty much all that was keeping my daughter out of hospital.

A tray of pasta.

Never before has a simple tray of pasta meant so much to me, or my daughter.

You don’t need to know someone’s struggles to be kind. You don’t need to know their story to show love. The smallest of gifts can impact another life so much. Be kind. Show compassion.

We have of course eaten the pasta now. But the love shown to my family that day lives on.

For the love of my child

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I will endure months of feeling sick and exhausted, and craving food combinations that are totally crazy just knowing it is because you are inside me.
I will face needles and tests and personal questions by strangers because you are changing my body in ways it has never been changed before.
I will research car seats and prams and clean areas of my house that haven’t seen a duster in years because I want to protect you.
I will endure pain on a level I never thought existed before for many hours on end just in order to give you life.
And when I first hold you all this will forever disappear from my memory because you are worth it.
For the love of my child.

I will repeatedly feed you, wind you, change you, and comfort you in a never ending cycle day and night because you need it.
I will exchange current pop music for lullabies, fashion heels for slippers and home cooked meals for a cold cup of coffee because I just want to be with you.
I will spend all night holding you while googling ‘help for colic’ or ‘cures for the teething baby’ because I only want the best for you.
I will cry when you say ‘mamma’ and video you when you take your first steps because I never knew what pride was until you came into my life.
For the love of my child

I will watch you with wonder, photograph you in the hope of remembering every last detail of your day, because I want to remember you.
I will measure medicine to the exact fraction of a millilitre, and cut grapes into tiny pieces to prevent you choking because you make me scared sometimes.
I will play make-believe games with you and talk to you like you are the most amazing person in the world because every moment with you is precious.
I will plan birthday surprises, take you to parks and splash in water at the pool with you because you make me smile everyday.
For the love of my child.

I will bubble on your first day of school and cheer you on at sports days because you are everything to me.
I will encourage you to do homework even when it is challenging for both of us because I want to teach you.
I will push you to go that bike or practice that dance recital because I believe in you.
I will nag you to brush teeth, wash your hair and be the best you can possibly be, because you are beautiful to me.
For the love of my child.

I will sometimes seem like your biggest enemy whilst always remaining your greatest ally, because we are too alike.
I will listen to your worries and hear the latest ins and outs of all your daily issues because I care deeply.
I will watch as you change from a toddler to a child to a teenager while it seemed like I was dozing because time passes far too quickly.
I will drive you places I would never go myself and buy you clothes that I have no idea what part of you they will cover because I respect your choices.
For the love of my child.

I will be overcome with emotion and pride at everything you achieve even if it seems trivial to you because my heart belongs to you.
I would spent my last penny on a new car for you or to see you through university because no sacrifice is too great for you.
I cover my walls in your photographs because my memory needs reminded so often of everything about you.
And even if I die I want the world to know that I lived my life and did it all
For the love of my child.

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The less they get, the happier they are

imageIt is the day after Christmas Day and if social media were to be believed my children have been pretty hard done by. Except they haven’t.

By society’s standard in the country I live in we are considered to have little income. But in actual fact we are very rich indeed.

This Christmas my children received less than many others. Much of what they had yesterday was second hard or given by family. Yet this truly has been our best Christmas ever.

Both of my beautiful twins have a developmental neurological condition called autism. Despite being seven year old my son is unable to speak and has significant communication difficulties. He can not ask or show me what he would like as a gift at any time of year and only plays on rare occasions with toys suitable for infants. My daughter has zero concept of peer pressure or current trends and instead likes to re-enact things she has seen on TV or a DVD. She likes simple, small toys that she can line up.

So I decided this year to give them the Christmas THEY wanted. I was brought up as one of four children with extended family of uncles, aunts and grandparents and a minimum of twelve people at the table for Christmas dinner every year. I loved it! My children would hate this!

So we socialised less. We had less people here; in fact we had no-one around on Christmas Day at all and we all stayed home.

We ate less. The kids had no selection boxes or sweets at all and instead had some fish bites and chips for lunch and sausages and mash with baked beans for dinner later on. We never even had pudding. Not because we could not afford it but because no-one was bothered.

We were at peace. We were content. The less we got and did, the happier we all were.

imageIsaac loved a simple book. And a toy toaster that only just cost marginally more then the wrapping paper I used to wrap it in! A family member bought him a plastic jar of magnetic letters. It brought him huge joy and despite being described by professionals as ‘own agenda’ and ‘in his own world’, he gave me eye contact and smiles and vocalised to get me to tell him the letters and numbers as he showed me them. An inexpensive item bringing priceless moments of love, communication, connection and education.

imageNaomi had a new DVD and some small characters. But one of the things she loved most was a small game of bowling which she used her new characters to play with time and time again. Turn taking, fine motor control, imagination and maths skills all coming into play in a toy that cost just a few pounds. And together we spent some beautiful time together playing a game of dominoes that cost half the price of a roll of sticky tape bought to wrap the gifts in! Gran bought her a tub of Lego and she helped me make a pencil. That pencil became a magic pencil that wrote letters and passwords all over the house.

A few days before Christmas I came back from a meeting at my sons school to a note through my door. All it said was there was a parcel in the bin for me. When I went to retrieve it I discovered two bin bags of wrapped gifts for my children.image I have no idea who did this but it was such a beautiful act. One box was full of second hand transformer type toys. My son has fiddled with these and my daughter is fascinated by the moving parts. Another gift was a craft set my daughter loves and another was some children’s make up which Naomi says will make her even more beautiful. (I don’t believe that is possible!)

It has been a very simple Christmas, by choice rather than need. The children got less but in doing so we ALL got more. More in the way of quality time with them, more peace, more calmness and more appreciation of the things we so often take for granted. For the first time they were not overwhelmed or pressured and neither were we.

I love Christmas; I always have done. But this year my children taught me the true meaning of it all. Baby Jesus was born in the most humble and basic of circumstances and in our humble Christmas this year we found a closeness and a magic we have not had before. My children showed me that the less they get, the happier they are.

Well apart from love that is! You can never ever have too much love!

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We came to an understanding…

I had plans for this summer. My son also had plans. The difficulty was our plans were very different.

Isaac is six. He has autism and global delay. He has neurofibromatosis. He also has huge sensory issues, rigid thinking and a massive love of lifts and hand dryers. He has no spoken language.

So when school finished for seven and a half weeks his plans involved food (mostly mashed potato and gravy), lifts, hand dryers, food, hand dryers and more lifts…and maybe the occasional ride on a train.

I, on the other hand, wanted day trips, parks, picnics, garden play, road trips, time seeing family and shared adventures with him and his twin sister.

Someone had to give….

We came to an understanding and it went a bit like this:
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I took him to a park…and then we went to a local supermarket where he could see the hand dryers.

I got what I wanted. He got what he wanted.

We were both happy.

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I took him to soft play. He climbed about and even came back for a huge tight cuddle…which was his way of really saying ‘let’s go to the toilets now and see the wonderful hand dryers mum!’

So that is what we did.

He would play for a bit and then watch those dryers a bit more.

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I took him to pottery painting. He humoured me by putting on the apron (with support) and putting a tiny amount of paint on his model…and then he tore that apron right off and found the toilets to look for a hand dryer!

He has no problem communicating what he wants when it comes to his agenda…

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I took him took him on a train ride to a big city. His favourite place there was the lift at the train station! Nothing else mattered.

We traveled for an hour by train just to see a lift! But you have never seen a happier boy than Isaac was at that lift!

By now we were coming to an understanding.

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I decided to try to have a day without lifts or hand dryers…

I took him to the park again. This time all he wanted was the bushes at the side of the path! He felt them, watched them, heard them and even licked them. Well, what else did I think he would do at the play park?

This is life with Isaac. He had no idea others were staring at him.

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We had an invite to a family event at a local restaurant. Isaac made me so proud sitting at a large table and eating his meal (mostly using cutlery) and even having some pudding. But that was followed by an full 20 minutes in the toilets at the…well I think you probably know by now where he wanted to go to.

It wasn’t like I was hoping to speak to those relatives anyway…

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A charity invited us for a day trip to the safari park. Isaac showed not one second of interest in any animal. In fact he never even glanced at them.

But when he saw a sign for toilets he smiled, ran, and flapped with excitement.

I don’t expect he will go into veterinary care when he is older…

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I took him and his sister on a steam train ride. He did enjoy looking out the window at the passing scenery and he did enjoy eating in the cafe. But if he could talk I am pretty sure his highlight would have been that the toilets had his favourite hand dryers in…the ones with buttons to press.

It is what it is. He sees the world in a very different way. And sometimes just having him with me is a bonus.

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By the end I just decided to run with it. I only had to look at the excitement in his eyes and the happiness on his face to know that lifts and hand dryers are the most important things in his life. And if I want to get anything achieved these are the motivating factors to use.

I still would have preferred to have spent summer building sand castles, eating ice-cream, visiting castles and museums and time together as a family building memories. Hand dryers are loud, functional things that I would use only to…well dry my hands really! Lifts are convenient and quick ways to change levels…and that is when my interest ends.

But love takes you to places and has you do things in life you don’t expect.

And so I have spent an insubordinate amount of time this summer listening to hand dryers and watching lifts. And in his own way we have had fun. I had my day trips, parks, picnics and quality time with my son. And he had his fixations.

Life is about compromise. Love is amount accepting someone,however different to you they are, and not always wanting to change them. Making things work is about coming to an understanding.

I have had a lovely summer. Isaac has had a magical time. We just spent our quality time in places I never really imagined.

Even his twin sister seems to have come to an understanding…image

They never told me THAT at diagnosis!

imageThey never told me THAT at diagnosis!

So I am a ‘special needs mum’, more by accident than choice. I have six-year-old twins who have an array of medical and developmental diagnosis. There have been a number of occasions when we have sat down with doctors, specialists and psychologists to receive spoken, and later written, diagnosis and each time brings a huge array of different emotions. But over time you realise that while professionals may give you a ‘name’ for what your child is experiencing there is so much else they DON’T tell you. Here are a few things no-one told me when my children were diagnosed:

1. This won’t just affect your child. It will affect the entire family.
Having a child with a genetic condition, or a developmental disability or who requires on-going support, puts a huge strain on everyone in the family. Parents have to walk through their own private journey to come to terms with, and hopefully eventually accept, that life is not going to be quite how they planned it. And siblings have to cope with perhaps not getting the same attention they need or facing seeing their brother or sister go through things no child should ever have to. Grandparents, uncles, aunts, and extended family members don’t always know what to say or how to support and so sometimes appear to criticise or upset when perhaps they never intended. It is like dropping a pebble in the ocean and seeing it ripple out way beyond where it first dropped. No-one told me that at diagnosis. I wish they had. I may have been more patient with family if they had.

2. This will put a huge strain on your relationships.
Even couples who are incredibly close and resilient struggle when you add in the added complication of a child with a diagnosis. Blame, jealousy of the child’s needs, extra financial pressure and lack of sleep, make it so difficult to maintain a healthy relationship on top of the caring responsibilities of a special needs child. Then there is the strain put on friendships when you can’t make as many social events or you cancel things at short notice. Social gatherings such as weddings, parties, and christening become quite a burden to a family who can not readily get a babysitter for a child with additional needs. I wasn’t prepared for how a diagnosis would affect my marriage and my friendships. I wish someone had told me. I may have been more understanding if they had.

3. This will stretch your finances beyond recognition.
Raising children is expensive. Raising a child with any sort of diagnosis is even more expensive. Hospital visits cost not only in travel and parking costs but often in food, treats for your brave soldier and perhaps time off work. For many families giving up work to become a full-time carer is the only option and that brings with it a drop in income that never seems to get replaced. Private therapies cost and toys with the words ‘special needs’ in front seem to double or triple in price. Extra heating to keep a sick child warm, ongoing clinic and therapy appointments, carers, equipment, specialist clothing, continence products and replacing broken communication devices all put a huge strain on the financial situation of a family. I had no idea about this when we first had a diagnosis. I wish I had known. I may have been more prepared for it if I had.

4. Everyone you speak to will now be an expert.
When I had no ‘name’ for my children’s challenges people were happy to listen, offer a hug and at the most perhaps suggest a few things they thought might help. But mostly people just felt sorry for me or my children. But once we received that all important diagnosis (especially for some reason when one of the diagnosis was autism) everyone seemed to suddenly become an expert! We needed to urgently start this therapy or that therapy! It was because we had the kids vaccinated! It was the stuff we fed them! They knew someone who had the same thing and they took this vitamin or read this book and now their child is cured. And so on. We were judged, and corrected, and criticised for everything from the moment we mentioned the diagnosis! No-one told me that at diagnosis! I wish they had. I might have developed a thicker skin quicker if they had.

5. Diagnosis is the start of a journey not the completion of one.
When you have spent months and years fighting to get your children’s needs recognised and acknowledged, when you have been on waiting lists for so long you can’t even remember the person’s name who referred you in the first place, when you have put your heart and strength and fight into this one thing, you can easily see the diagnosis as the end of a very long journey. It is three years this month since we were told my son had classic autism, global developmental delay and severe learning difficulties. Three years on and I am still fighting his corner, still trying to get people to listen, and still pushing for more support. I naively thought everything would ‘fall into place’ after we had a diagnosis. Sadly that never happened and I have discovered it rarely does. They never told me that at diagnosis. I wish they had. I would have saved some of my strength and stamina if I had known.

6. There will be days or years later you will still be sad.
I expected to cry the day we were given the diagnosis. What I didn’t expect is that years later there would still be days I would look at my child and cry. That does not mean I am not a happy person. My children fill me with pride daily. They are achieving in their own way all the time. But some days I watch them struggle. Or see something another child does easily that they have yet to master (like talking or waving goodbye) and the tears come easy. And I have realised I am not alone. Some days I relive that diagnosis day and it stabs me in the chest as much as it did the first day I heard it. I don’t live there anymore but I still hurt. And that is ok. It’s just no-one told me that on diagnosis day. I would have kept some tissues with me had I known.

7. Diagnosis doesn’t change your child. Love does.
I looked at my child differently the day they were diagnosed. I saw a child struggling with medical issues or developmental issues and I worried for the future. I saw a life mapped out for them I never planned nor wanted and that broke my heart. I thought the diagnosis would somehow define them. But years later I realise that has not happened. As time has gone on people see my children simply for who they are not the name given to their communication difficulties or social struggles or medical challenges. When I introduce my children I just call them by name. That is who they are. That is who they will always be. They never told me THAT at diagnosis. Maybe if they had I would have realised it would all be ok.

They gave a name that day for the collection of difficulties my child presented with. But that was all. A name. A word. Something I could learn more about to help them. They took my breath away for a moment. But they never ever took my child.

My children are awesome. But they never told me THAT on diagnosis day either. That is ok though. I tell them that everyday anyway!
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