Five Christmas gifts to give to a special needs parent

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I used to think it was only children who were asked in December ‘what would you like for Christmas?‘. It seems as a parent I still get asked this. I tend to answer like most parents do with a simple ‘oh I have everything I need already thanks’ or the soppy mum variation of ‘my kids are all I could ever want and more.’

Both are true to an extent. My life is very full of smiles, blessings, love and joy but as a full time carer for two children with extra needs life is also very full of other things like hospital appointments, meetings, therapy and endless paperwork!

So what would be good Christmas presents for a special needs parent like me?

How about the following:

1. A listening ear.
We all have our own burdens to carry and none of us are without problems in life, yet so often we become so engrossed in our own busyness we forget to take time to listen to others. Giving me your time to just talk while you listen without judgement or trying to ‘fix’ things is one of the greatest gifts I could get all year round. Come visit me at home while we have coffee, or sit with me in the hospital waiting room. I may seem like I am coping but silently I pray for someone who cares enough to listen to my worries and my struggles. If you can’t physically be with me being at the end of a phone or even letting me let off steam via email or message is such a precious gift. You may not be able to wrap up your ears under the tree but if you could loan me them sometimes that would be amazing.

2. A shoulder to cry on.
Some days are just overwhelming. Some mornings by the time I have managed to get the children safely to school I am exhausted and emotional. Lack of sleep, worry for the future and constant battles on behalf of my children become weary. I, like so many other special needs parents, long for a safe and tender place to cry where we feel free and accepted to pour out our hearts. We need that release in order to gain strength to face another day. We need to let the stress come out in our tears knowing there is no shame in showing weakness. Could you be those shoulders? Will you let me cry without question and hand me the tissues without needing to tell me I am over reacting? That would be a gift that can not be measured this Christmas.

3. An encouraging word.
Few people truly realise how negative the world of special needs parenting can be. Forms ask for things your child is unable to do, assessments focus on your child’s shortfalls, teachers comment on how your child is not hitting targets like the others. Hospital appointments bring news that breaks your heart and even the simplest appointments like the dentist are utterly draining. Then add the guilt that your child can’t talk, or walk yet or play like other children. While other children achieve at sports, or drama or art your child excels more at loud outbursts, screaming endlessly or staying awake all night. Encouraging words are few and far between in my world so a little text, or message or a simple smile goes a long long way to helping brighten my day. An unexpected card saying ‘I care’ is like an oasis in a drought. It is beautiful, precious and priceless. You simply can’t give this gift often enough to a special needs parent.

4. Practical help.
I would never expect anyone else to have to see to my children’s personal needs nor do I expect anyone to be up all night long with them. However, there are some small very practical things though that anyone can do for a special needs parent that can make a huge difference. How about holding the door open when you see them pushing a wheelchair? Or holding the lift to save them waiting longer with a distressed child? If you see them carrying a child into a car seat in the supermarket car park why not offer to take their trolley back for them? These small gestures of kindness mean the world to someone who often feels ignored or invisible. Kindness and practical support never ever go unnoticed to a special needs parent and they restore our faith in humanity. Christmas is an ideal time to make a special effort to help the special needs parent as places are busier, louder and more chaotic than usual but remember a little help all year round would never go amiss.

5. Finally be respectful.
It is so easy at this time of year when the weather is awful and time is tight to just park in that disabled space for two minutes while you just nip in for bread. You may never ever think of doing that at any other time but for me as a parent of two disabled children this is a time when I need those spaces even more so. The same with the disabled toilet. I understand this time of year means most public toilets have queues and you don’t mean to upset anyone. However, these facilities are so precious to families like mine and our loved ones need that space and privacy to have their personal needs met by someone else. We don’t have the privilege of being able to wait. Please don’t push that disabled trolley away in your haste to get to the smaller on at the back. Having a soaking wet trolley may be annoying to you but to those of us who rely on specialist seating for our disabled children having an icy, snowy seat prohibits us from going shopping at all. Your thoughts and respect at Christmas mean a lot.

I realise now I do actually want a few things for Christmas this year. I want friendship, time, love and respect and those are not things money can buy, yet they are the most special and perfect gifts any special needs parent could want not just at Christmas but throughout the year.

Could you give me any of these? Do you know a special needs parent who could do with some Christmas magic? Let them know you care today. It could make this Christmas the best one they have ever had.

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This post first appeared here

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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.”

The power of a friend

To have a friend. To share laughter, smiles, dreams, moments in time. To have someone to hug. Someone who understands. Someone who wants to be with you. Someone who looks out for you, seeks out your company. Talks about you. To see a smile on someone’s face when your name is mentioned. To know someone cares and loves you.

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This.

Well what can I say? My daughter has found the magic that we know as a friend.

I have spent hours reading her a social story written by her speech therapist. To the point both Naomi and myself have it memorised. “I can say ‘hi’ to someone and take their hand. We can have fun playing together.” How simple does that sound? But when you can’t get that little word ‘hi’ out because you are so frightened, so anxious and overwhelmed. When you see so many faces of children that you can’t work out who the ‘someone’ could be. When you don’t have the courage to touch another child let alone take their hand. So we read the social story, we talked about it and we even tried to act it out. But we still had a child coming home from nursery with hands on her hips complaining ‘mummy, they want me to talk to other children. Why would I want to do that?’.

How do you explain the beauty of friendship to a child who loves their own company more than anything else? Friendship has to be experienced to see the true wonder of it. The healing that can come through having someone want to be with you. The joy that comes from sharing life with someone else.

And then Sarita started nursery.

Naomi couldn’t say ‘hi’ like her story said she should. So she smiled instead. And Sarita smiled back. That was 9 weeks ago. Now one three year old child has changed my daughters life. She started talking to Sarita on the bus. And then began to talk to her in the nursery room. And one day her nursery teacher asked Naomi a question. And because she had broken her silence by talking to her friend, with Sarita right by her side, my daughter found the strength to answer the teacher in a voice that could be heard.

With Sarita sitting beside her, Naomi has started taking part in snack time. Her little voice can now be heard at singing time mingled beside the sweetest voice of her friend. Naomi is choosing to play beside her friend rather than hiding in a corner looking at books. Where before Naomi would watch on while others participated, she is now following the lead of her friend and joining activities she has never touched in almost two years in the nursery room.

The girls have photos of each other in their homes. I can’t begin to explain just how much Sarita and her siblings and parents mean to me in the short time I have known them. I can not even explain the amount we all have in common. The girls could not have found a more perfect friend in each other.

And my heart rejoices. My 5 year old is experiencing the power of friendship. And in doing so she is linking two families, helping two mothers walk together and help each other, encouraging many and bringing healing.

The power of a friend.

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