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.