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!

When you watch your child struggling

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It’s the end of term here in Scotland which traditionally means schools and nurseries relax the rules a little bit, organise sports days and school trips and have end of year awards ceremonies and graduations. Parents love them, teachers spend more time decorating rooms, organising teams and taking photographs of children than they do teaching, and social media fills up with post after post of proud parents posting of their child’s achievements. But for some children, my own two included, all these changes bring stress, anxiety and confusion.

My children don’t excel in sports, or academics. School trips makes their anxiety levels soar. And the relaxing of the rules is so confusing for them both.

So while parent after parent takes pride in their child winning races, telling them all the details of their school trip or enjoying all the wonders of this years school fair, I rejoice in the simple fact of my child taking part.

Isaac had his first ever sports day at his special needs school last week. I knew he had been preparing for it when his legs had even more bruises than normal on them and he came home upset. They sent me home a photograph of his assistant helping him bend down to pick up something in a race. I have no idea what else when on that day. But I do know he took part in some of it. And that makes me incredibly proud. He has no concept of sport, or competing, or what he was supposed to do. He would have been much happier running around the hall flapping in circles. But with constant support he took part. It was a struggle for him and his teacher. But they tried. And that was worth getting a gold medal in my book!

He had his first ever school trip this week. His class of five children went to the safari park. But his taxi arrived that morning and it was a different colour, and his beloved food catalogue wasn’t there as it was in the other car. No catalogue, wrong car and the added confusion of a ‘different’ day were all too much and it took thee adults to carry him into the taxi kicking and screaming. I should have stood outside the school gates waving him away on a bus like every other parent of a child in mainstream school. Instead I was still hearing his crying as the taxi pulled away from our street. My heart was broken seeing him struggle so much. And knowing he can not come home and share with me the joys and excitement of his day because he can not speak. He came home with three photographs in his bag. The tears of pride I had when he chose to sit on my knee and point to those pictures. That was worth the struggle to get him into that taxi.

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Naomi had her first sports day at nursery last week too. As all the other children independently came out of the class and down the three stairs into the garden she had to be supported by a member of staff. As all the others formed a line and filed into rows of seats she just stood there. She had no idea of the social ‘rules’ going on so could not follow them. She had to be seated on the last seat away from her friends. As the races began her face went paler and paler. As she watched children run across a small section of garden, she looked so lost and was huddled into the rows in front by staff and pupils alike like a little lost sheep just following the crowd. When it came to her race she never moved until the word ‘go’ was said and she ran as fact her little legs could go, which isn’t very fast at all. The others finished and the next group were all lined up but she wasn’t even at the finish line yet. The tears in my eyes were a mixture of sadness, pride and overwhelming love all rolled into one. The staff and parents cheered her on like she was one of their own. And finally she made it. The others full of energy while she was exhausted from just one short race. With difficulty and support she completed every race in a similar manner! Last by a long way every time. Thankfully there was no sack race or hurdles as she still can’t jump. As all the children received medals and had pictures taken there was a massive round of applause for my daughter as she stepped forward to get hers. We had all watched her struggle. And we all celebrated her victory.

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This week she struggled again. This time it was the nursery graduation. The hat and coat annoyed her so much. The noise of all the children and adults was so loud for her. The heat in the room made her feel sick. But she sang, she watched videos of everyone’s time in nursery, and she clapped for the other children receiving their certificates and school ties. All the while her face was getting paler and her hands were moving more in front of her showing her anxiety. As all the others jumped excitedly onto the made up stage she needed two members of staff to support her up. She stood at the top terrified. But she did it. I can not begin to tell you how proud I was of her. At that moment it didn’t matter one bit that she doesn’t speak there, or that she is still wearing a nappy, or that she has autism. At that moment in time I was so proud of her for getting to that point, for overcoming her struggles and taking part.

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Tomorrow we have Isaac’s end of term celebration at his school. I know he will struggle. But I know with support he will get through it.

It is hard to watch your child struggle. But it is even harder for them. Sometimes courage can be found in children who are trying hard to take part despite everything.

They say it is the taking part that counts. And even though Naomi has had nose bleeds, fainted,and cried with it all this week and Isaac has bit himself, screamed and gone deeper into his own world as a result of struggling with the changes end of term has entailed, they have both made me so proud.

I watched my children struggle. But I watched them overcome too. It’s been a year of struggles but also a year of breakthrough.
Life really is about taking part. Because for many children, like mine, that is an achievement all on it’s own.