The day he chose his own birthday present

imageI had waited for this day for many years.

He has yet to tell me what he would like for Christmas or a birthday. He has yet to speak, period. He isn’t able to look through a toy catalogue and mark the things he likes. He has no concept of adverts and no interest in toy shops other than the automatic doors or the lift.

Birthdays and Christmas are therefore hard. We basically guess what he might like based on observation and knowledge of his sensory preferences. Sometimes we get it right. More often than not we completely waste our money on things he never goes near.

If we find it hard how much harder do relatives and friends find buying for a child who never plays with toys?

So at his birthday party this year lots of people opted to give him money. And I totally understood why.

But that left me with an even bigger problem: now we HAVE to do something and get something for him.

I was stuck.

So in desperation I decided to venture into a shop with him. That meant pushing him beyond his comfort zone of the automatic doors at the entrance. It meant picking a time when the shop would be most quiet, not only in terms of people but also in terms of tannoy announcements, music, and noisy technology. It meant risking a huge public meltdown.

I tried to prepare him. It’s not like I can tell him he has birthday money and he can come choose a toy. He has no concept of what a birthday is let alone what money is. I am not entirely sure he even realises what a shop is? So I kept it simple and told him he was coming somewhere special with mummy to get something he would really like.

He loves his mummy does that boy.

So I searched for his socks and shoes and lifted him into the car. At seven this gets harder by the day. I took him to a shop we have been to many times before. The whole journey I kept repeating that today we were going into the shop and he could chose himself something nice. As I glanced at him flapping in the mirror I thought for a moment he may actually have understood me.

I think I was right.

He took my hand. He walked right through those beloved doors and he smiled and laughed and flapped like he had just won a coveted prize.

Then he stopped right where he was. He picked something off the shelf and he took my hand and dragged me to the checkout.

I was so utterly in love with him. I was bursting with pride! I wanted to shout about this magical achievement to the ends of the world.

My son has just chosen his own birthday present!

I had no need to worry about the cost. Or wether he needed batteries. Or even if I needed scissors or a screwdriver to get through the packaging. I never even needed to purchase a carrier bag!

He held his prized possession all the way home in the car, turning it, licking it, and smiling at it.

He knew he had chosen well. And so did I.

I actually wonder why I never thought of this before…

After all surely every seven year old wants a tin of baked beans for their birthday present!

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Dear parent, please forgive me

Dear parent, please forgive me

I am trying to think what I need to buy for dinner tonight. I don’t need to hear your child screaming in my ear and shouting at you. Is the supermarket really the place to bring your child when they are like that?
Dear parent of THAT child…I am sorry I judged you. I am you now and it is tough. I had no right to look down on you or think wrong of you or your child. Please forgive me.

Oh really? I nearly knocked your child down in the middle of the road! Could you not keep a closer eye on them? Or even better teach them road sense!
Dear parent of THAT child…I now understand completely! One second was all it took! And you told them so often and yet they still did it. It just isn’t alway possible to hold them every single minute of every day. I went off at you that day. I am sorry. Please forgive me. And please look out for my child when you are driving too.

There is NO way I would let a child that age have a dummy in their mouth! That is appalling! It is so bad for their speech, their teeth and it looks terrible!
Did I seriously think that? Gosh I was so ignorant! Dear parent, I am sorry I judged you without thinking. I am now THAT parent with a seven year old clinging to dear life for his ‘dum dum’. I get it now! Sometimes you just have to do what you have to do and ignore others. I have no idea what battles your child was facing or what was causing them to need comfort that day. Who was I to judge? I am now back in that baby aisle with a child three quarters of my height and thinking of you.

Why would you put a child as old as that in a buggy when they should be walking! Honestly some parents are just so lazy and do anything for an easy life!
Someone should have slapped me! I am now THAT parent of a much older child who has only in the last year moved from a disability buggy to a wheelchair. I am still pushing him and I am sure many people think of me now as a lazy parent! If only they knew. If only I had known all those years ago!

I wasn’t nasty before I had children. But looking back I was judgemental. I knew about parenting. I was aware of disabilities.

But I was not living it.

I never knew that pain when you feel the world is staring at you in a supermarket because your child decides to have a hissy fit because you said no. I never knew that shock and adrenalin rush when you suddenly see a car approach your child who has wandered into the middle of the road and your heart misses a beat. I had idealistic views of children and the stages they should go through.

Dear parents, please forgive me.

I am now you. And this is harder than I ever thought it would be. I salute you. And I hope you forgive me.

From a parent who once looked down on you.

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Sometimes a simple yes or no is enough

imageMy son doesn’t speak. But ever single day I speak to him. And I hope.
I tell him what we are doing, where we are going and who we will meet. He may have difficulties communicating but his understanding is improving all the time.
He is 7 and about 7 months ago he developed a very precious skill of being able to shake his head to communicate ‘no’. It was a moment of breakthrough. Prior to this we had screaming which could mean anything from yes, no or leave me alone. You could take you pick but if you were wrong the screaming just intensified.

He was so frustrated. And so was I.

Sometimes we just need a simple yes or no answer. That is often just enough.

I have mastered the art of understanding my precious son. I have had the privilege of seven years of learning his ways, his body language and his expressions. I can see his tears before the first drop falls from his eyes and I know what will make him laugh before any sound emits from his mouth. With patience we taught him to tap our hands to make a choice but we still could not get a consistent yes or no for simple questions. He could choose between two things. Would you like mashed potato or chips? Would you like to go to the park or swimming? But when faced with him fussing we could never get a clear answer to something as simple as would you like something to eat? Are you in pain?

Those were the times when just a simple yes or no would help us all so much.

This weekend as we went about our business I looked back at my children in the car and reminded them both we were on our way to the hairdressers to get their hair cuts. As I turned again to face the front I heard something that made me jump. I had just heard a voice I never ever dreamed I would ever hear! It was loud, unexpected and forceful. It was beautiful, perfect and simple. My son shouted at us! He shouted ‘no’! Thank God I wasn’t driving or we may have crashed. As I turned to look at my wonderful boy my heart missed a beat. I was smiling, yet crying. Rejoicing, yet weeping.

He just said NO! It was enough!

No doubt I should have not put him through the stress of that hair cut having clearly heard him voice his objection. But believe me when I say it badly needed done. I needed to see his stunning big brown eyes and he needed to have better vision without seeing nothing but his long brown locks. He hated it. But he survived.

Back home I longed to be able to share that moment with so many of you who follow his journey. So I tried to get him to say it again. I asked that poor boy so many questions willing him to prove he could do it again. He didn’t.

He actually went one better!

Dressed in only his pyjamas I asked him if he liked the rain. (He hates it!) and he made a sound. It was indistinguishable. I asked if he wanted his coat on (he hates his coat!) and again he made a noise but it was more of a grunt. I was determined! I asked him one final question: would you like to go out? And clear as anything he stood up, headed to the door and said ‘yeah’.

He said ‘yeah’!!!

Sometimes a simple yes or no is enough.

Do you know how long I have wanted to hear just yes or no? With Isaac that has been seven years. But with so many other things in life it has taken even longer. When I struggled with infertility for 9 years all I wanted was a yes or no answer to the question, would I have children? When I was told my children had autism I wanted a yes or no answer to questions like will they ever get a job?, will they live independently? When my boy was diagnosed with neurofibromatosis I needed a yes or no answer to will be need medical treatment and be ok? Now I want to ask professionals things like will my son ever be toilet trained? Will he ever be able to have a conversation with me? Will he ever have friends? Some days I want to ask God, are you listening?

I want to know so much. I long for so much. I am believing for so much.

But sometimes just a simple yes or no is enough to keep me going for a very long time.

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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It’s all about me!

Being positive is not being in denial. Posting highlights of your day on social media is not being fake. Trying to find hope in hopelessness is not wrong.

Attitude means everything.

And recently I have had to give myself a good shake.

Living with the daily challenges of two children who struggle can really get me down. Some days, more than I would like to publicly admit, I cry. I worry about the future. I struggle through everyday, often silently. And I feel alone.

But then I realised something important. I came to realise it was actually all about me!

I could look at things negative. Or I could try to see a positive.

imageFor example I could have wallowed in upset at the thought my daughter was so anxious she never made it to her first ever school trip. I could have become angry that she seemed to be excluding herself due to fear. But instead I chose to take her out for the day instead and shared a picture of her smiling face at a science centre rather than dwelling on her inability to join her peers at the zoo. School trip failing verses mummy and daughter quality time? Which would you have thought about more?

imageSame with sports day. I could shed many a tear over the fact my daughter was unable to join in many of the activities due to her difficulties. I could share pictures of an older girl having to take her hand and support her for even the simplest of races. Or I could take pride in the fact that on the tenth go at running around the cones my six-year-old finally had the confidence to say ‘can I try that myself?’. Those nine turns at needing support could have broken me but that final time doing it independently will make up for that every single time.
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And then there was her class assembly. I was hurt and devastated when my daughter came home to say she was the only child in the class who did not have a speaking part. Her teacher had asked her and she had told them she felt she could not do it. Though I admired her honestly I have to admit I also felt so sad. For her, and for me. But can I tell you something? There was not a dry eye in the house on the day of her assembly when she took centre stage and held the entire show together with the most crucial part in the play despite not saying a single word! In the words of my six-year-old, ‘We can’t all have speaking parts. Someone has to do the acting!’ There is so much wisdom in that.

I could think about the sadness of taking her to yet another appointment.Or I could look at her smile as she played innocently in the waiting room and her sheer delight at being given insoles to help turn her feet. I think as adults we too often set our minds on that appointment rather than the child-like look at it all.
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I could be angry at the fact I never get to sit in church with everyone else due to my children’s needs. Or I could take pride in the fact my children will sit outside the hall in their own little bubbles allowing me to at least be in the building. This is progress.

I could be embarrassed that I took my children to visit a friend and my son preferred to feel her garden bush than to be social. Or I could snap a picture of his happy face and be grateful my friend accepts us for who we are. And is happy for us to come back anytime.
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I could shed tears at the fact my daughter recently went to a party and spent two hours sitting at the side next to me on her own. Or I could be delighted she was invited in the first place and see this as progress that she stayed in the room and enjoyed watching.
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I could become frustrated at the fact everywhere we go my son is fixated with the elevators. Or I could ride with him, film him and discover on play back that he actually said the word ‘again’! Had we not been at that lift I would have missed that word! He hasn’t said it since but I have a video as proof and in time I may one day hear it once more!
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And finally I could despair at the fact that for almost two years now my son has refused to wear anything other than his beloved school jumper. I mean literally every day I only get to see him in red. It started off funny but then in time I somehow gave up hope. Then, just today, he let me put a t-shirt on him and he kept it on happily all day long! And after all those tears, hopelessness and feelings of despair, I found a reason to smile again.
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My children have some real struggles. I will never deny that. And everyday is a challenge. But sometimes it isn’t about them. It is about attitude: My attitude. Sometimes it is how I see things that makes a real difference to everyone else.

And now I realise that: it is all about me!

Missing the bigger picture

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‘How will that impact on his sister?’, I asked at yet another meeting.
‘We are here to talk about Isaac’, was the reply.
This is the reality of life with more than one child.
In my case both my children have additional support needs, but even if my daughter was ‘typical’ developing she should still be considered when it comes to matters of her brother. The impact on her is just as big, and at times even bigger, than on her brother.
It is all too easy to say, for example, that we have to let one scream, harm himself and cry for hours on end as he tries to push boundaries and test limits. But how does that affect his sister? Or us? Would professionals be able to hear a sibling, or their own child, someone they love dearly, cry in distress for hours and not be effected?

I wish therapists would stop missing the bigger picture.

‘Sorry, we are not able to increase the allocation of supplies despite medical support.’
Another disappointing call updating us on an ongoing challenge we have been having.
People in an office, looking at limited facts on a screen, making a decision based on only the details of that one child with no thought to how this will affect an entire family, and beyond. My son is a number to them. To me he is a precious individual who deserves dignity, respect and to have his basic needs met.

I wish services would stop missing the bigger picture.

A recent visit to a medical practitioner with my children left me with some ‘projects’ to work on over the summer. The only problem is that both children have ‘projects’ that, while increasing their development and skills and helping their medical conditions, they will also both require huge amounts of time and support from me. I also need to be very mindful of the fact summer should be a time of fun, and making memories, and that my children will grow all too quickly. It is very easy for doctors and nurses to suggest health care plans, or developmental milestones to try to achieve, or even to give timetables to implement programmes of therapies. I smile, and leave with yet more literature while thinking all the time, ‘what about my other child?’. My time is not exclusive to one child, even if their needs would call for this, and I also have a house to run and a husband who needs me too. Seven weeks might seem a huge chunk of time to medical trained professionals but it can pass in the blink of an eye when I take into consideration hospital appointments, days out, quality time and household duties.

I wish professionals would stop missing the bigger picture.

End of term is bringing some challenges too, not least the fact my twins attend different schools with very different calendars of activities. The pressure to attend two different sports days, end of term assemblies and prize givings, services and summer fairs can seen rather overwhelming. How do you choose when dates clash? How do you fit in homework, or juggle after school activities with the extra needs that having a disabled child brings. A few times recently I have sent my daughter to school without her reading book, or her packed lunch, or her PE kit. And when school calls I am expected to leave everything to get these things to her, even in the midst of caring duties to her brother. Sometimes I am miles away in meetings, driving or simply changing a nappy. Each school sees one child. And they forget the family is much bigger than that one child.

I wish schools would stop missing the bigger picture.

It is easy for us all to see one thing in isolation: a child crying, a struggling mum, someone sitting alone in a cafe looking out the window. It is all too easy to hear noise from the house next door and come to the wrong conclusion, or berate someone for not keeping their garden tidy when the weather seems nice. Without realising we can be quick to judge or form an opinion, even when we have no knowledge of the background, or circumstances of someone else.

I have lost count the amount of comments I have had on my children because they ‘look fine’ or because they won’t reply to them or give eye contact. People are very quick to comment on the fact my children still use a dummy for bed, or wear nappies or carry a comfort cloth around. There is more going on than you think.

Let’s not be guilty of missing the bigger picture.

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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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