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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The secret epidemic affecting special needs parents

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I had a message from a fellow special needs parent this week. Two words of that message have impacted on me greatly. She wrote:

I’m struggling

It is so common for me to hear this. It is the centre piece of every support group, the most common theme on online  forums, the single most heard words when I meet up with people.

For some of those parents it is so bad that I encourage them to see a doctor for support.

In my years as a special needs parent I have found there is a secret epidemic affecting so many special needs parents and it needs talked about: We need to talk about depression.

Depression in the special needs mum or dad is so understandable but too often goes unnoticed.

People see a mum crying and think she is having a bad day. What they don’t know about is all the other nights she cried in private and no-one knew.

My eyes are more tuned to see people struggling since I have walked that path. I know what it is like to look at my child and worry for his future. I know what it is like to feel there is no hope. I recognise that feeling of failure when you realise your child is just not developing as they should. I know the pain of taking your child to hospital when they should be outside playing with friends.

It is isolating when your child has special needs and it is ok to admit that.

Society sadly expects us to be positive, upbeat and encouraging and often I see parents who are so emotionally overwhelmed, so sleep deprived, so beaten down by the system, that they have so little hope.

When you have a child who struggles in school everyday, a child who won’t eat, or has no friends, or is being bullied for being different, or who can not play in a park as the equipment is unsuitable for their needs, how would you feel? If you child was denied the support they need, or could not communicate, or is living in pain every day would you not be heartbroken?

Is it any wonder there is an epidemic of depression among parents of children with autism?

While so many are on medication, and this is vital, we also as a society need to recognise that special needs parenting is exhausting and draining.

Medication is wonderful but what about better support and understanding for our children, better care for those in society who are full time carers, training for staff so they can better meet the needs of the most vulnerable, and a society less prone to judge and quicker to encourage?

The current epidemic of depression among autism families is concerning but what worries me more is that continual budget cuts and ignorance in society is breeding not only depression among the parents but sadly I am now seeing siblings, and even special needs children themselves, struggling with the same issues.

We need to recognise this epidemic and do something about it now.

Don’t ever be afraid to tell someone you a real struggling. Don’t ever be afraid to ask for help. Together we can support each other and help make a better future for us and our children.

 

This post first appeared here.

When the local children mocked my son with special needs

img_5960For months we had watched a new children’s play park being build behind our house. We had walked along to see it with excitement and I checked the plans to see what equipment would be suitable for my children, especially for my son who has significant support needs.

I saw advertisements for an opening event but knew this would be more than both my children with autism would be able to cope with, so I never mentioned it to my daughter. Instead, later that evening when the event was over, I put their socks and shoes on and surprised them with a walk around to the new park for the first time.

There were no roads to cross but I still had to hold both their hands tightly since neither has any awareness of danger, but once in the enclosed park I allowed my son to run ahead flapping with excitement. I opened the gate and guided the children in. It was early evening but still daylight and it was no surprise that they were the youngest children there. The park was busy and noisy though with older children and teenagers, yet not one parent in sight. I was unsure if my children would cope but what happened next made me realise that it would not be my children who would struggle but actually me!

 

 

img_5958As my son laughed and walked around stimming I helped my daughter climb to get to the slide. As she climbed up a bunch of children ran towards her shouting, having climbed up the slide and over the top of the frame she was on. I looked round to see another bunch of children running in circles around my son laughing in his face. My children were shocked and scared. They had come to play not be tormented in their local playground!

The more I asked the older kids to leave my children alone the more they seemed to annoy them. They spun the roundabout with my son on far quicker than he was happy with making him scream. They mocked his stimming and noises and ran amok round all the swings and apparatus. It was as if they saw how vulnerable my children were and that made them an instant target. It was awful.

I shouted at them to stop. There were no adults around and the kids were clearly not caring. They poked at my son, knocked into him and climbed on whatever he was playing on. My non verbal son with vision impairment and severe autism was oblivious to what they were doing. The more he made noises and flapped the more they laughed and pointed. His twin sister thought they were being ‘silly’ and kept asking why big children were in a little kids park.

img_5955I played with my children and tried to ignore them. I took ‘happy pics’ and planned to post them to Facebook when I got home. People don’t like hearing the bad stuff so I was just going to head those pics up with ‘fun in the park’. My children did have fun. Unfortunately for them other children also had fun at their expense.

I wonder if the parents of those older children have any idea what their kids were up to that Saturday evening? My twins are unaware of what really happened that night, but I am. In an era where disability awareness is common place and inclusion in schools is the norm it scares me that other children still see bullying and mocking kids with special needs something entertaining.

My local authority website boasts that this new park has equipment that is ‘inclusive’ for all children. They have changed some apparatus but sadly we still have a long way to go to change attitudes before I can once again take my children to the park without fear of local children mocking my son with special needs.

img_5959We will be back at that park soon. My son will once again flap, spin and make noises. My daughter will want in the baby swing and will sit on the roundabout with her brother. She will go down the slide again and again and again. My children thrive with repetition. Let’s just hope the local children don’t repeat the bullying I witnessed of my son last weekend.

The park changed. Now it is time to change hearts and minds too.

The nine household items responsible for meltdowns in my autistic children.

Don’t they look so sweet and happy?

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That’s because they usually are!

Yet all that can change in an instant when they see or hear certain household items. There are certain things pretty much every home has that cause both of these little angels to go into complete sensory meltdown in the blink of an eye. They become terrified, traumatised and tearful and we often end up exhausted.

So what could be the cause of such fear you may ask?

Here are the top household items that cause meltdowns in my children with autism (in no particular order).

1. The vacuum cleaner.

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Just the very appearance of this cleaner causes both children to run for the hills with their ears covered! It’s noisy, smelly, changes the carpets and moves their toys. Wisdom has taught me to keep this machine firmly in the cupboard until the kids are out of the way.

2. The hairdryer.

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I have tried to get them to hold it, turn it on and off and even use it on me but no, this item is more like a raoring lion than a plastic air blower to them. Every single time it is needed to be used they fight it even if it is only for my hair. I doubt either of them has a future in hairdressing!

3. Nail clippers.

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Oh boy you have never seen a meltdown until you see my children react to these little things! They run, hide and scream so loud I am surprised my neighbours have never called the police to us. They would rather have nails jagging into them or so long their shoes no longer fit than have me take five minutes to gently use nail clippers. Even the highest trained manicurist would struggle to contain the fear my kids have for nail trimming.

4. The shower.

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We are blessed to have a bath (in which my kids would happily spend all night in) but sometimes for speed it would be lovely to have them step into the shower quickly before school or after garden play. I may as well suggest being eaten alive by a crocodile! Showers in swimming pools, caravans and hotels are avoided like the plague!

5. A hair brush.

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I am a gentle parent, that much I promise you! I brush their hair slowly and calmly and never pull or tug but we still have a huge daily battle to get hair brushed or combed. Gel, spray or mouse is never well recieved so I settle for a basic brush most days. I pray they never ever get the dreaded head lice!

6. The hair trimmer.

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I dread the time we have to use these. We have tried barbers and hairdressers but after badly cut ears, and even being banned from one local barbers we decided to try doing it ourselves. It gets so bad I find myself using a number one so that we can go a lot longer before it is required again. It takes days for my son to recover from a hair cut of any sort.

7. Toothpaste and toothbrush.

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I don’t think there is a brand of toothpaste we haven’t tried in a vain attempt to get my children to brush their teeth. They are too strong, too minty, too lumpy or too colourful! It never ceases to amaze me that my child chews everything he can get his hands on yet goes crazy at the sight of a toothbrush…something that is actually designed to go in his mouth! We have tried apps on the iPad, songs, timers, character toothpaste and brushes and visual timetables but the sensory overload of brushing seems to cause us to hit a brick wall every night. Dentistry is another career choice I reckon I can score off the list for them both!

8. The food mixer.

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Thankfully this gadget isn’t used as often as the others but every time it is used we have meltdown city. It is loud, it vibrates and it makes it impossible for them to stay in the same room. I am eternally grateful it is only ever used for a few minutes although the calming down of the children takes so much longer!

9. Socks.

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Yes you read that right! Socks! They don’t make noise, or make them wet or even go in their mouths yet socks drive my children nuts! We have tried the seemless variety and every colour under the sun but it seems anything that covers their feet is unbearable and ought to be binned. We have had socks thrown out of car windows, left in school, flushed down the toilet and hidden at the bottom of the toy box. They are the last item of clothing put on before school and the first items to come off. Cold feet (with uncut nails!) is the way forward apparently!

As long as my children have no shower, long nails with no socks on, wet (uncut) hair that hasn’t been brushed and unclean teeth and my carpets are not vacuumed all is happy in my household!

They don’t seem to see the problems…unfortunately I do!

If you happen to walk past my house and hears screaming you can take a bet on which household item of these I tried using.

While the kids are at school I am off to have a shower, brush my teeth, dry my hair and trim my nails…and put socks on. It will be nice to do them all meltdowns free for once!

 

 

 

Never before has a tray of pasta meant so much to me

imageNever before has a tray of pasta meant so much to me

I could so easily write a negative post. Life is anything but a field of roses right now but right in the midst of pain and struggles a little kindness, a hint of love, or even a tray of pasta can change things!

This post is dedicated to the manager of a pizza restaurant local to me. I will be printing out a copy and hand delivering it to her this week.

I need her to know that never before has a tray of pasta meant so much to me.

imageMy children are struggling. I try and disguise that but I can’t. In the last month my son has endured some difficult medical test including 24 hours of wires glued to his head:

And a few weeks later having to have anaesthetic for an MRI to identify where all his tumours are growing inside him.

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For any child these things are a real challenge but when you can not talk, have limited understanding and have a diagnosis of severe autism and neurofibromatosis these things just seem so much harder; for the child and the parents.

As well as this he has had to cope with a change of teacher at school and beginning overnight respite. He has been brave but in turn we have had to deal with some challenging behaviour.

For his twin sister these procedures and the ensuing changes to her schedule have been so upsetting and disorientating. End of term changes at school, a wobbly tooth and her friend being off school have made everything seem so much worse. This all causes one major difficulty: when stressed Naomi stops eating. Really stops eating.

Isaac loves his food. Anything edible is the highlight of his day. Among his many favourite foods are pizza, salad and garlic bread. One of the very few things his twin sister will eat is a certain pasta from a pizza restaurant.

Sometimes as a parent you do what you need to do to survive.

As much as I try to hide it it is very obvious even to a stranger that my children have struggles. Yet in this particular restaurant we always seem to be welcome.

By now you may have guessed what happened. My daughter broke her self imposed stress related fast and picked at her favourite pasta. As I took her brother up to the buffet the manager spoke to me with a smile and said she noticed my daughter only ever ate the pasta so she would go put more on ready for if she she wanted it. I wanted to hug her.

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Never before has a tray of pasta meant so much to me.

I had to say something because by now I was emotional. I sort of whispered that Naomi has autism and loves the pasta and thanked her for her kindness.

I thought nothing more of it until I went to pay and the manager said she had something for me. She handed me a bag with an entire tray of the pasta in!

She had no idea of our story. She had no idea the stress we had all been through and the daily struggles we face. She had no idea that that pasta was pretty much all that was keeping my daughter out of hospital.

A tray of pasta.

Never before has a simple tray of pasta meant so much to me, or my daughter.

You don’t need to know someone’s struggles to be kind. You don’t need to know their story to show love. The smallest of gifts can impact another life so much. Be kind. Show compassion.

We have of course eaten the pasta now. But the love shown to my family that day lives on.

When there is less like you

 

imageSeven year ago I started my journey of parenthood. It has been the most exhilarating, exhausting and enlightening journey ever. Over those years many have journeyed along with me but every year more of those people take a slightly different route. Every now and again I stop and look around, and while there are still many of you cheering me on, I notice as my children grow that there are less like me.

When my child was not speaking at aged one there were hundreds of others like me. That first birthday came and so many of us were yet to hear ‘mamma’ or ‘daddy’ and so we journeyed together for another year.

When the second birthday came along a lot of those children were now talking. It was beautiful. But some of us were still waiting. So we travelled on another year.

When the third birthday came I looked around to see some were crying happy tears as those precious words were beginning to come slowly. There were still others with me walking the path together of ‘is this autism’ or ‘should I be worried by now’ and we consoled ourselves together in our group. I wasn’t alone.

As we approached four I could hear some cheering us on. “This is the year” they would say, “Nursery will bring him on”, “he will soon get there!”. Hope carried me on as one by one more of my companions on my journey started to see their little ones develop and grow and finally speak.

There were less of us by now. The odds were not in our favour as much. Our children were starting school and still not speaking. This started to get serious and worrying and yet we continued to journey on supporting each other. As our special babies began school something changed. A few more, slowly but steadily, began to speak and the group became even less. As beautiful as these moments were it becomes more and more scary when there is less like you.

Still a few more trailed off by the time my child reached six. Therapists, teachers and parents rejoicing at little voices emerging years after they should. Miracles still happening.

And there we were, still waiting.

He is seven and a half now. And still not speaking. My true companions are few now and reality starts to settle in. Are we all here now for life? Is there still hope for us? Is there a time to say that the therapies are not working for our child? Our small group sub divides between those who have children using pictures to communicate and those who use sign language. Some are even managing both! We start to celebrate communication instead of language.

Then there is my son: Seven, no language, not using picture communication and only mastering three basic signs.

It is lonely here in my world. It really is hard to stay positive. It gets harder to find stories of children like mine. Sometimes it feels like we were forgotten. I admit it is heartbreaking when there is less like you..

But the longer we wait…the more of a miracle it becomes.

So we keep on waiting..even if we are left waiting alone.

Six things you may not know about my child with developmental delay

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The first diagnosis my son ever had was ‘global developmental delay’ and like so many I understood this to mean he was a little bit behind his peers but would probably, in time and with support, be just fine.

He was only one year old when we were told he was struggling and not meeting key milestones like sitting up unaided, making attempts at speech and playing with toys.

I was in denial. I was sad.

I stopped taking him places (probably one of the worst things I could have done in hindsight) and I ploughed through each day willing him to learn skills others mastered with ease. I blamed myself. I cried myself to sleep at night. I sang to him, read to him and played with him for hours, but very little changed.
As years went on we collected diagnosis like a stamp collector collects stamps.

The term developmental delay is now slowly being replaced by his doctors to ‘learning difficulties’and I have come to accept now that he never will catch up with others.

Over the last seven years I have found so few people have any understanding of what developmental delay actually means. It is such a huge, all encompassing, spectrum ranging from children with mild delays in some areas to children of school age still unable to weight bear or even support their own head. It covers children who are behind in reading and writing, to children who are fully wheelchair bound and unable to speak. It can be a stand alone diagnosis or the effect of other more complex issues like cerebral palsy, autism, Down’s syndrome and many complex genetic conditions (some we have yet to name!)

Though every child and situation is different, here are a few facts about developmental delay as it applies to my son:

1. Some children DO catch up, other’s don’t.

My beautiful son, will forever be developing at their own unique pace and time and will always need support right into adult life.

2. As a child gets older the term developmental delay is likely to disappear and instead be replaced by some form of learning difficulty or perhaps simply referred to in terms of severity of other conditions such as severe autism.

This does NOT mean the child no longer has delays just that the way of describing those delays has changed.

3. Although my son’s development is way behind others there is so much about him that will always be ‘age appropriate’.

For example he started eating solid food at the exact same time as other babies at around six month old. He lost his first tooth at aged 5 and he wears clothes for his chronological age, not his developmental age. His body continues to grow and develop even if his mind and skills are years younger. He will still go through puberty as he grows and he eats just as much as any other child his age.

4. Developmental delay is often unseen and therefore can often be classed as an invisible disability.

This does not make it any less difficult for the child or adult or the carers. If you see a much older child still being supervised in a toilet or not talking when you speak to them please think about the fact they may look ok but they could be struggling to understand or communicate.

5. Milestones are worth celebrating whatever age they happen.

Child development has stages that almost every child goes through regardless of when it happens. A child with developmental delay will go through the same stages just at a different time. For example they learn to sit, then crawl, then stand, then walk. Or they learn to make noise, then babble then the first word. If your five year old is babbling for the first time this is wonderful because at some point they may change that babble to a word. If your four year old can stand unaided then one day soon they may learn to walk.

6. Developmental delay does not define anyone.

Society may put pressure on people to succeed and compete but that does not mean that we have to. Life is not about the destination but about the journey. For some they are just enjoying the journey at a slower pace and that is every bit as wonderful as those who choose to run.

As Martin Luther King Jn says:
“If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl, but whatever you do you have to keep moving forward.”

That, I can assure you, is what my son is doing. If he can move forward then I can too. However long this journey takes we are enjoying it together.

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