How a church changed summer for one special needs family

 

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One email.

That was all it took.

A lot of courage but just one email.

Last summer was so hard and I knew I could not face it again so I swallowed my pride and dropped my Church office a note.

‘Could anyone help me out?…’

They responded quickly. They responded lovingly. They reached out and changed my entire summer.

A few weeks before the schools broke up I was asked to meet with them. They had ideas and I had ideas and we discussed simple ways people, many we hardly knew, could help us through the challenges of seven weeks holiday with two complex needs children.

I suggested perhaps one meal a week that I didn’t have to cook or prepare. They went above and beyond and hand delivered up to three meals a week, some of them arriving still hot and ready to be served. Roast chicken, bolagnaise, curry, home made cakes, puddings, side dishes and sometimes even a starter too! That someone would take the time to buy ingredients, cook a meal and deliver it just for us is truly overwhelming. Every little pea, or grain of rice shared spoke of love in action.

It was suggested that people could sit with my children to allow my husband and myself an hour for a coffee. One hour during the holidays would have been amazing but once again they went one step further and my children looked forward with excitement to the two ‘best babysitters’ who came once a week for a couple of hours whatever the weather. Two hours out of their week but that time to me was like a wave of respite and sanctuary in a stormy ocean. It also had the added bonus that every Sunday my children ran to the two woman, desperate to see them again and connect with them even more. Every minute of time spent together sowing seeds of love that will change both my children and the precious ladies.

imageAnother couple invited me to bring the children to her house one day. Neither of us were to know it would be the hottest day of the summer and the children had a wonderful time in a paddling pool (well my son preferred a plastic crate!) and watering plants. Precious memories for me, the children, but also for the couple who also enjoyed a wonderful day shared with friends. My children were able to be themselves without imagepressure or stress and their needs almost disappeared as quickly as the water did from the paddling pool when my son decided to tip it out! One day; a million memories made.

I mentioned at the meeting that there was one day I could not even begin to face that summer. It was a day I had dreaded for months as I could see no practical solution in sight. I had a very important hospital appointment to attend in a hospital miles from home that would take hours. Due to the treatment I needed it was not possible for the children to attend. The appointment could not be cancelled and I had no idea how I was going to do it. In stepped the church once again with a plan. What did my children like doing? Where was their favourite place to go? What do they like eating? And so, with tears in my eyes, a plan was formed. My non verbal, severely autistic, lift loving son, would get to go on his favourite lift tour on a train to the city with three adults to support him. I would provide nappies, clothes, money and anything else and they would provide the manpower. Meanwhile my autistic, nervous, selective mute daughter would be looked after at home in the comfort of her own surroundings to keep her anxiety at bay. How do you ever replay people for giving you something like that? It would be no exaggeration to call them angels.

imageIn among this I received texts of encouragement, prayers, hugs and someone even delivered nappies that they saw advertised for free on social media and thought about me and my son immediately. In fact I felt so encouraged I began fundraising to build my children a sensory room and with the help of the church all the funds were raised within just four weeks. We are currently building that now.

This summer has been so different to any other. For the first time I have not felt isolated, forgotten or alone. My church changed summer for my special needs family and I can not thank them enough.

Matthew 25:40 (NIV) “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

A thank you letter to the friend who told me I had depression

My dear friend,

It was just after my children had returned to school after the long summer holidays. The weather was still decent and the house quiet, yet I had no motivation.

Summer with two children with autism had drained me. There just seemed to be nothing left of me to give. I sat on the couch with a cup of tea and logged onto social media. It was my escape.

All you did was start a chat.

“How are you?”

I was fine. Of course I was fine. I was just tired after seven weeks of non stop coping with my children day and night. I adore my children. They were now back at school and routine was re-established so why would I be anything else but contented, happy and relaxed.

We chatted briefly for a bit while I scrolled through pics of smart children in uniforms, smiling selfies and the usual other tweets and statuses. Today I was just not feeling it for some reason.

I was exhausted. I convinced myself that was it. It was the change from having a noisy, chaotic house for seven weeks to having silence. It was the lack of sleep that comes with having children with autism. It was the one too many meltdowns I had dealt with. It was the isolation of summer. It was the facing another school year of my son still not speaking. It was the thought of another term full of meetings, forms, homework, appointments and even more meetings. It was the anxiety of wondering how my children were coping with huge changes and the thought of how they would be when they came home and we had the brunt of all that stress. It was wondering how to reconnect with my husband who I had barely had a chance to speak to for seven weeks alone. A mix of everything; that was what was wrong today. Tomorrow I would be fine.

An hour or so later, and still sitting on that sofa, my doorbell rang.

Of course it was you.

“I’m worried about you.”

So we chatted face to face for a bit. I just needed a down day I told you. Let me catch up with some sleep and get my house in order and all will be fine. Maybe I just need to get my hair cut or something? Perhaps a bit of retail therapy would get my spark back?

“Perhaps you should go see your doctor?” You said.

Why would my doctor want to see me? Antibiotics or painkillers won’t help me. I don’t feel ‘ill’?

“You may be depressed?”

Who me? Really?

I called the doctor in the end, if nothing else just to get you off my back.

Thank you for pushing me. Thank you for caring enough to reach out to me. Thank you for noticing me struggling.

Yes, you were right, I was depressed. I never expected that. Maybe you did? Maybe you were able to see something I couldn’t?

I am not sure if you remember that day as much as I do? It was seven months ago now but it changed my life. The doctor gave me tablets and I am so much stronger, more motivated and happier now.

One day I may be well enough to come off them. For now the stress and strain of everyday life with two young children with autism means I need them. I am not ashamed of that. Why should I be?

I am just ashamed I never sought help sooner.

I will never forget you my friend. I have not seen you in person for a while now but you were there at the right time and I am grateful for that.

You taught me to look after myself. You also taught me that sometimes love and care means stepping out when you think someone is struggling.

I just want you to know that I am looking out for others now just as you looked out for me.

You taught me that sometimes others can have an insight that the person themselves can not see.

You taught me that friendship and social media can be a way to spot things in others and help them.

You were more than a virtual friend, you were there when I needed you.

Thank you again.

I really hope all is well with you and yours.

In gratitude forever,

One of your social media friends.

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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.

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I’d rather walk through the storm with you

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Winter in Scotland can be brutal sometimes. Yesterday morning was one of those mornings. Cold, wet, very windy and still pretty dark as the children needed to leave for school. So even though her school is, at most, ten minutes walk from our house, I offered my little six-year-old the chance to take the car.

‘No’ she insisted. ‘I’d rather walk through the storm with you.’

So we wrapped up, zipped up and headed outside.

There were times when she was almost blown away. But we held hands tightly and neither of us planned on letting go.

There were times we could hardly see where we were going. But we just kept walking, one step at a time, encouraging each other every step.

There were moments I thought we should turn back and climb into the warmth of the house or the dryness of the car. But we had a determination and a purpose and the destination was within reach. It may have only been a ten minute walk but there were moments it felt like eternity. The intensity of the wind, the driving rain in our faces and the cold taking our breath away. ‘Keep going’ she told me and keep going we did.

Of course we arrived. We were a little windswept, our clothes were wet and our faces red from the cold. But as I left her in the safety of her school and walked back home myself through that storm I realised the value of walking that day.

My little daughter was gaining strength, courage, determination, and the gift of encouragement this morning that going to school the easier way would not have taught her. And she chose to do that of her own free will. She wanted to go through the storm with me because she loves me.

I feel like I have been walking through a storm like that for years. When I found out my precious children were not like other children it felt like I was being beaten down by a gale force wind. Constant appointments, diagnosis and fighting for what they need feeling like cold, icy rain forever falling on top of me. The waking up every morning facing the same pressures of caring like the darkness of a cold winters morning that never seems to end. The not knowing the future like the freezing cold temperatures numbing you to the pain.

It is so much easier to get through the storm holding someone’s hand. There is strength that comes from the encouragement of another little voice saying ‘keep going’. There is a love that grows deeper, a bond that gets stronger and a determination that grows continually by facing the storms of life with another one.

Don’t go it alone.

I know that having you all alongside me is what is making this thing called life easier.

Everyone one of you means so much to me.

Don’t let go of my hand please…because I’d rather walk through the storm with you.

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