They just sat there holding hands

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


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

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

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

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

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

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

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

There’s no better support than the love of your sister

There’s been so much happening in the last few months. We have moved house, the twins have moved to a new nursery and we have had an abundance of appointments. We are now in the midst of working alongside a sleep counsellor, a developmental community paediatrician, a medical paediatrician, a genetic nurse, a social worker, a speech and language therapist, an occupational therapist and our public health nurse. Life is busy but it is such a relief to have support in place and to have so many people working with us to support us in caring for our children.

Today we received the first of the equipment which can make such a difference to caring for my son. I am so grateful. Grateful that such simple equipment can be provided. Grateful that within a week of being assessed it was delivered to our door free of charge. But mostly grateful that someone listened. Someone cared.

That is the best support any person, any professional, any friend can give. The support of a listening ear, a caring heart and a shoulder to cry on when the nights are long and the days are scary. That’s where support groups come into their own. Parents going through similar experiences who can hold your hand, listen to your story and support you through the challenges as well as rejoice with you in the breakthroughs.

I am so grateful to be part of groups like that. Some are online with people I have never met but who have walked similar paths and can help navigate tricky ground they have walked through before. Some are in real life who have watched my children grow and now know them personally. And then there are the others who support and encourage me who don’t know what it is like to raise a special needs child but who can join their faith with mine, share a hug and listen and do their best to understand. And pray. All of these people are precious and I need their support more than they may ever know.

So I feel supported right now. Great.

But I am not the one with autism. I am not the one who has severe problems communicating, is unable to speak and is fighting an invisible condition called neurofibromatosis. All the professionals I mentioned above have one person in common: a little boy called Isaac. We all want to help and support this boy to achieve the best he can. We want to help him learn to sleep, perhaps learn to talk one day, to appreciate the value in communicating, to share his world with us, to support him physically and to encourage his development, to know if he is in pain. They write plans, discuss options, make referrals, supply questionnaires, have meetings, make phone calls  give us equipment and ideas and sometimes even work directly with him.

But meanwhile, without any training or degree, without any agenda or targets to meet, there is someone very special supporting this little boy and who is working miracles in the background. While mum and dad sit discussing schools and development with the paediatrician a precious little one is helping her brother remove his coat and socks (he pulled his own shoes off long before!) and guiding him to the corner where the toys are. And when he starts getting unsettled, even for a moment, she is there opening his cup of juice for him, holding his hand and handing him new toys she knows he likes. While mum and dad discuss genetic conditions and family trees at the genetic clinic there is a little one sitting close by to Isaac working the portable dvd player for him, keeping him amused with Peppa Pig. She is looking at him, talking to him, touching him. Basic things that so often the professional don’t know how to do as successfully as a loving sister.

And in all the busyness of dealing with so many people in our lives I want to take the time today to mention the biggest support that Isaac has in his life right now: the love of his twin sister.

If Isaac wanders off she leaves her dinner in search of him “just making sure he is ok, mummy and then I will be right back”. If I get frustrated at him she will tell me softly “It’s ok mummy, he has autism and he doesn’t mean it”. If he splashes soapy water in her face for the hundredth time at bath time she will wipe it off and once again show him how to do “little splashes, Isaac, remember how I showed you.” When we were at a church service recently and Isaac was noisily rummaging through a box of pens and I placed my hand over his to quieten him down, his sister speaks up and says “he’s only little mummy, let him play.” When asked where she would like to go to she will tell you she loves the library not just because she loves books but because she knows her brother loves the automatic doors there!

I am so glad to have professionals supporting me and my family. I am thankful to God for each and every one of them and all they can offer but to young Isaac there will never be a greater support in his life than the love of his twin sister.

And I am so proud of her for that.

Here she is showing him how to climb the steps to go down a slide. How many professionals can do that?Image