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.
image
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.
image
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.
image
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.
image
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!
image
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.
image
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!

He is there

imageCompanies often have silent partners. Many businesses and charities do too. It is a highly successful strategy that brings stability, maturity, and grounding to an organisation.

Yet people are quick to judge when it seems a marriage has the same balance.

Sometimes I go to meetings for my children on my own. I send emails on my own and answer and make phone calls mostly on my own.

But that does not mean I am truly on my own. You may not see him, but my ‘silent partner’ is there. My children have a father. I have a husband.

And there is a reason why he is more ‘behind the scenes’ than some people would like.

Everyone copes differently. That does not mean that any one way is right. And we all have different strengths.

I find social situations quite enjoyable. My ‘silent partner’ does not.
Meetings rarely make me nervous or intimidated. My soul mate finds them heavy, frustrating and stressful.
I find talking openly about my children’s difficulties fairly straightforward. Communication is one of my strong points. My husband finds this difficult and draining.
I quite enjoy form filling. For my partner this is like sticking pins in himself.
I find multi-tasking comes as second nature. For my lover this is confusing and he would much rather finish one task before moving onto the next. Interruptions like unexpected phone calls, cancelled meetings and children’s illness cause him to become anxious and flustered.
It is second nature to me to put the ‘right’ jumper on the right child, make sure the food is not touching on the plate, and do up the buttons on their coat in the ‘right’ order. But the stress of ensuring things are ‘just right’ for our autistic twins can become overwhelming for my husband. The slight change of detail can throw either one of our children into a screaming meltdown that lasts all night, so his fears are both real and understandable.
Homework is a mystery for my partner. He struggled though school and finds modern ways of doing things confusing.
Dealing with a screaming child who can not speak limits my partners patience. And I totally understand that. I am far from perfect and my patience runs thin at times too.

It doesn’t help that both our children have complex needs. They both thrive on routine and have rigid ways of doing things. They are more relaxed when the same person does the same thing everyday. They need the same words used, the same voice, the same physical touch and way of doing things. So they both cling to mum as if their life depended on it. In many ways it does.

But they know, just as much as I do, that dad is still there. He may seem in the background. But he is there.image

Some of you will be saying right now that my ‘silent partner’ is just a typical man. Some may be annoyed he is leaving more to me. Some of you may even wonder if he understands it all. A few may even feel he doesn’t care.

Let me tell you something: He cares. He loves. And he sees. He is very much here.

But there is something I feel people should know about this very important ‘silent partner’ in my life: My husband has neurofibromatosis type 1. The exact same genetic tumour producing condition our son has.

Some of his struggles are due to his upbringing, his personality, his age, or his lack of support in school. But some of it is because he has NF1. That affects his way of thinking, his behaviour, and his personality. It is part of him. It makes him less confident, means he struggles more with some academic things and he may seem less social. It is all too easy to judge his ‘silence’ as lack of caring or interest. That could not be further from the truth. I never knew he had NF when I married him. But even if I had it would not have affected my love for him.

Sometimes the most amazing support comes from someone just silently holding you, listening as you pour out your heart. Often that silent partner is the one with the wisdom, insight and calmness to hold it all together. Sometimes the most powerful thing anyone can do is just be there.

He has neurofibromatosis. He isn’t as ‘in your face’ as I am. He isn’t as known to all the professionals dealing with our children as I am. He doesn’t write in the home school diary, or read the bedtime story.

But he does something very important. For me. And for his children.

He is there.

And we all love him.

image

Missing the bigger picture

image

‘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.

imageimage

Why is it so hard to hear what you already know?

imageSometimes you already know something. Your mind has already gathered all the facts and knowledge and came to its own conclusion. Circumstances have been leading up to things and you *think* you have it all worked out.

That is until someone else says what you have been thinking out loud. Then suddenly your world crumbles and you go to pieces, even though you kind of knew it anyway!

In one of our many meetings this last week a professional who has seen my children regularly for over six years voiced out loud my inner thoughts on the subject of my sons inability to speak. Isaac is now six and a half. And he still has no speech. He makes noises, he screams, he takes me by the hand to things he wants, and now he is older he sometimes just helps himself. He has only been pointing for around a year.

I swallowed hard and asked her for her honest opinion. “Will Isaac ever speak?” I *thought* I was ready for what she would say. I already know deep down that the older he gets the more unlikely it is he will talk. I live with his frustrations and anger everyday and hold him while he cries every night. I celebrate all his efforts at communication in every form yet still long to one day hear his voice. But the realist in me knows that time is passing and he still has yet to master the tiniest of words that babies less than a year say with ease. We haven’t had the ‘ta’ or ‘hiya’ or even the basic ‘goo’ and ‘gaaa’. We have no waving goodbye or clapping in glee. Eye contact and joint attention that comes naturally to the youngest of children is still a mystery to my six-year-old. I am not in denial.

Yet when she told me my boy is unlikely to ever speak to me it still broke me.

Why is it so hard to hear what you already know?

Next month marks the three-year anniversary of his first major diagnosis: Classic autism with global developmental delay and severe learning difficulties. He had only recently mastered walking at that point, had no language and was very much locked in his own world. We had been told he had autism since he was 21 months and had yet to meet any professionals who disagreed with this in any way.

Yet on the day we took him to that clinic assessment there was still a tiny part of me hoping everyone was wrong. My world fell apart when I left that appointment hearing what I already knew spoken back to me by someone else.

Isn’t it strange how hard it is to hear someone else say what you already know?

Maybe when no-one else confirms it we just try to somehow forget about it? Maybe we don’t really face our own worst thoughts? Maybe the reality of someone else saying it just makes us realise it is true after all. But then they add to the pain and harsh reality by sending it to you in writing. And we find ourselves mourning in our darkest moments all over again.

I sort of knew deep down there was more going on. He had other ‘symptoms’ children with autism didn’t really have. But I never wanted to hear someone mention that out loud. At least not to my face. Yet one day five months later we heard the doctor tell us our baby also had neurofibromatosis type 1. Combined with his other conditions (and we may yet hear more as we wait for full genetic blood results to come back) the future is not the brightest for my son.

I know he will need care throughout his life. I know it is unlikely he will ever drive, own a house, have a successful career or go to university. But am I still not quite ready for someone to voice those things to me.

Why is it so hard to hear what you already know? Because it means you have to finally face up to it. It means others know your worst fears and concerns. It makes you vulnerable. It brings emotions to the forefront you would rather others never got to see. It is like stealing away that tiny shred of hope you held on to for dear life.

Someone asked me how the meeting went. I told them we were just told some stuff we already knew. They looked at me in wonder as the tears ran down my face.

Why is it so hard to hear what you already know?