Never Underestimate Anyone, However Much They Struggle

2020 has been a year most want to forget but even more so for my family. Even before any virus was in the news my family faced difficulties. Back in January my elderly mum fell and broke her femur.

After an operation and a stay in hospital I went from full time caring for two disabled children and carer for my husband to also being full time carer for my mum.

At 75 her recovery has been long and painful and my children have had to adapt to granny not being able to do many of the things she did before, which hasn’t been easy for them as their own struggles and autism make adapting to change hard.

For my 11 year old son it’s been especially hard. He is non verbal with significantly high care needs himself. Unable to read or write, severely autistic with learning disabilities, epileptic and with a large mass on his brain, coupled with vision impairment and a progressive genetic condition, he very much lives in the moment and, so everyone thought, is pretty much unable to imagine the difficulties of another person.

But one day he showed us all why we should never underestimate anyone, regardless how much they appear to struggle.

I had my mum with me as I was taking Isaac to the park. He ran ahead, as always, giggling and flapping with excitement. He didn’t look back once as he headed for the gate, pulled it open and headed for the familiar frames and slides. Seeing him ahead and knowing he was safe I supported my elderly mum so she could see her grandson playing.

Isaac did his familiar (and very rigid) routine, climbing up the smaller easier equipment and sliding down the slide built for children half his age. He then moved to another area, circling the equipment as he always does and flapping. Eager to enjoy her grandson at play my mum ventured down to where Isaac was.

But then Isaac decided his rituals were complete and he began to make his way back up and towards the gate as I watched from nearby. I was torn now between helping my elderly mum with mobility difficulties or chasing my vulnerable non verbal son who has no sense of danger.

But just then my mum called to her grandson:

‘Isaac wait for gran! I need help. Gran has a sore leg.’

As I waited to stop my son escaping so I could help my mum I watched in astonishment as my son stopped, turned and paused. What happened next blew me away and has taught me a lesson I will never forget.

My son, the most unlikely helper, a child still fully dependent on help himself, unable to verbally communicate, not able to read or write at 11, processed the pain and need for help of another person and responded perfectly. He turned and headed right back to his own elderly gran, reached out and took her hand, and guided her safely back through the park.

As I ran down planning to step in and help I found I wasn’t needed so I just took my phone out and snapped this beautiful picture to always remind myself to never ever limit my child again.

Yes my 11 year old is autistic. Yes he’s non verbal. He absolutely has significant and high care needs and always will. He’ll always need 24/7 care.

But that’s not all he is. He’s also a compassionate, loving, wonderful boy who can show the world that we should never limit anyone, regardless what difficulties or struggles they face in life.

Everyone has potential, even the ones who appear to struggle the most.

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The reason I don’t like to eat

My beautiful blue eyed girl has recently been diagnosed with an eating disorder. Three years ago she was diagnosed with autism. Last week I sat with her and we talked. This is all her own words. She asked me to share so others understand.

 

Sometimes bedtime is the best time. It is the one time people leave me alone. They stop asking things like ‘are you hungry Naomi?’, ‘would you like a drink Naomi?‘, ”are you sure you don’t want a snack?’
Why do people eat and drink so much anyway? I have things I much prefer doing like watching you tube and playing my own games with my toys.
How am I meant to eat or drink when I am doing something else?
Sometimes people even want me to change rooms to eat.
School do that.
Why?
I am comfortable and happy and then you make me move and my brain is thinking about where am I going, did I leave anything I might need, what if things have changed when I get back? What is someone touches anything?
Those things scare me.
You want me to move to somewhere, sit down and eat what you have made.
But I didn’t ask for it. I did not know it was happening. No-one told me I would smell different things, hear different voices and touch different stuff and now you want me to even taste things?
It is too much so I just freeze.
I can hear you but everything is fuzzy.
I am so scared. I am scared that people are looking at me. I am scared everyone is going to talk to me. I feel sick.

Why do people eat funny things? People eat things with bright colours and I can’t understand that. My body is a pinky beige colour. That is a safe colour. Like a light brown sort of colour. If my skin is ok then things that colour are ok too.

You want to know why I still sometimes don’t eat things that are my skin colour? Well it is just wrong. And my brain is all upset about food. When I play with my toys they look the same, they stay the same and they act the same. Sometimes I eat something and it tastes nice, it is the right colour and it fells nice and soft in my mouth. But then some days I eat what you tell me is the same and it isn’t the same. It is not the way I saw it the time I liked it. It does not have the same softness and I get upset. You ruined it. Why do people do that? I order my toys in lines so when I look at them they look the same. I feel safe like that. But you don’t let me do that with food. If I put it in order it makes sense. I want to know it is ‘right’ and I need to check it. What if it is wrong and it goes inside me? That would hurt me.

That is why I have to have one thing then another. My brain tells me ‘this is nugget skins’ and I remember what they taste like. You damage it if it has sauce or potatoes on. Then it is not nugget skins but some weird thing my brain does not know. So all nuggets are dangerous. And I get scared again.

I like soft. When I chew sometimes I get a little tiny bit to swallow and sometime a bigger bit. That means it tastes different and it does not make sense. Nibbling is safer. My teeth don’t want to touch stuff because then it tastes of teeth not what it should taste like. Teeth is not a nice flavour. You know that because no one makes anything teeth flavour do they?

I feel sick sometimes. Mummy says it is hunger but I don’t get it. My tummy makes me feel sick and people say it needs food when it already wants to get rid of what is in there so why add more? That does not make sense to me.

I don’t think people like me sometimes. They shout at me and keep making me eat. I get scared and sad, Please leave me alone. I like it best when mummy puts things I like near me when I am playing so my toys can look at it and tell me it is ok. I know my world is ok then.

All day long people eat eat eat. And I get scared scared and more scared. I eat at breakfast and then you want me to eat again for lunch or snack at school, then dinner, then supper.

I want it to end some days. That’s why bedtime is the best for me.

Mummy asked me if I dream about food when I sleep. No way! I dream about trains. Thomas tank engine is brilliant. He never eats and I like that!

This article first appeared here

 

Being mum to an anxious child

What is it like being mum to a child with severe anxiety?

It is helping her downstairs every morning despite the fact she can do it herself. It is reassuring her, yet again, that she won’t fall just because once, several years ago, she heard mum fell down the stairs and hurt herself.

It is encouraging her to dress herself when she is afraid she may fall over because that happened once before and she never forgets.

It is reassuring her that her clothes have been washed and that she has worn them lots before and said they were ‘OK’. It is showing her, as always, that the labels have been removed so they won’t hurt her, the trousers are soft enough and the socks have no sharp bits. It is telling her she is beautiful so often in the hope she will one day believe me.

It is letting her see the breakfast cereal in the box otherwise she will refuse to eat it in case you have somehow bought another brand by mistake. It is pouring out just the right amount in case some accidentally spills over the bowl because she lives in fear she may somehow get in trouble even though she never has.

It is brushing her teeth religiously because the dentist said she should do it twice a day and she worries what will happen if she doesn’t.

It is walking to school making sure we avoid uneven ground because she may just fall and hurt herself and that would be a disaster.

It is going over and over all that the day at school holds because she is worried you may have forgotten her PE kid (we checked three times before we left the house) or she may have done something not quite perfect in her homework the night before. It is the heartbreak of watching her become mute as she walks through that school gate holding your hand like you are sending her into the lions den.

It is watching her walk (never run as you may be pulled up for that!) to her line, avoiding eye contact or body contact with any other child in the playground in case they say something that upsets her or they accidentally touch her. It is looking at her standing facing the front, arms straight by her side like a soldier as she lines up, terrified she may lose points for her class because she is not forming a straight enough line.

That was just the first hour of our day.

My daughter will bite her lips, chew her tongue, barely eat or speak but conform to everything school expects of her. She will inwardly break her heart if she spells one word wrong in a speaking test (and break down about it that night at home), she will freeze during gym lessons when they ask her to stand on a bench for fear of falling. She will take a school dinner as she doesn’t want to be seen as different yet she will hardly touch it. She would never ask for someone to help her cut it up as she is too anxious she may get in trouble for doing so. She would even eat something she was allergic too if she felt it would make a teacher happy.

Living with that level of anxiety is not healthy yet so many children experience anxiety on that level daily.

I can reassure her. I can encourage her and prepare her for change, but I can not take her anxiety away.

Watching her refuse to eat because she had a wobbly tooth was awful. Hearing her cry because she can not read a word in her new reading book breaks my heart.

Sometimes you may see me climb on soft play with my seven year old and think I am crazy. Sometimes you may hear me say I laid beside my child until she fell asleep and you may feel I need to let her grow up. You may see me lift her on and off escalators and think I am keeping her a baby. If you knew I held her in my lap and cradled her and wiped her tears last night would you perhaps think I was over protective?

I am not an overly anxious person and it is so hard to parent a child who fears every moving animal is out to bite her, every child is out to hurt her, every adult is wanting to get her into trouble and every broken toy is her fault.

Her anxiety is huge. Her worries are real.

Today I will do my best to help her as I do every day. Tomorrow she will be just as anxious and I will try yet again to help her. We get through one day at a time.

I acknowledge her anxieties but I also help her overcome them.

That is the role of a mum to a child with severe anxiety.

That is what it is like being mum to an anxious child.

The seven hurtful things people say about my child with an eating disorder

My beautiful blue eyed daughter has recently been diagnosed with an eating disorder at the tender age of seven. While some people have been very supportive others have said some things that really hurt. Here are the most hurtful things I have been told so far:

1. She will eat when she is hungry!
No she will not. If she did she would not have been diagnosed with an eating disorder. She doesn’t ask for food or drink and is not aware when she is hungry. She would go all day without drinking or eating and not even realise.

2. That is what happens when you give in to fussy children!
So is giving my daughter the food she will actually eat and keeping her alive giving in to her? So the fact she would starve herself to the point of requiring medical attention should be ignored just so that I don’t ‘give in’ to her? In that case when you next go to a restaurant or take away don’t bother looking through the menu at what you would like just take whatever they give you and eat it! There is a clear distinction between a child with fussy eating, a child with major sensory issues and a child with a complex eating disorder.

3. Maybe if you let her make it she would eat it.
My daughter enjoys making cakes and dinners and puddings. She enjoys shopping for ingredients and following recipes. But she still refuses to eat it. There is a big difference between cooking and eating. While some children’s issues include handling, mixing and cooking food, my daughter will happily participate in these activities until you ask anything to pass her mouth. I wish I could explain why that is, but I can’t.

4. Can’t you just force feed her?
That seems like abuse to me. Yes there have been times where I have had to almost force vital medications into her and spoon feed her yoghurt or pureed fruit just to get something inside her. But force feeding her would not only have a huge phycological impact on her metal wellbeing but it would also send her the message that she has no control or choice. When I tried feeding her before she would simply vomit it back up. She needs to be able to control what goes inside her mouth and learn that food is good. I need to teach her that eating is positive and not a forced issue that creates distrust and upset.

5. You should try taking cookery classes. Maybe she just doesn’t like your cooking?
This is implying that I am the cause of my child’s mental disorder. Thank you for that! Are you aware I have another child who not only loves my cooking but often wants more and eats vegetables, fruit, salad and a good range of meats and carbohydrates? Have you seen the meals I make for my children? I don’t need guilt heaped on me on top of the stress I already have. That only makes things worse.

6. They never had such rubbish in my days. You just ate what was put in front of you when I was young.
I am so glad you were able to eat the food you were given. I am very confident there would have been children and adults around in ‘your day’ who also had eating disorders you just may not have been aware of them. As awareness grows and more people are willing to talk about these things the more it may ‘appear’ to increase, though I believe it has always been there.

7. Let me have her for a week and I will cure her.
Thank you once again for making me feel inferior and inadequate. What you may not realise is that I would never put my daughter through the stress and anxiety of living with anyone else for a week. Her issues run deep and she requires patience, understanding and love. I would love one day for her to be ‘cured’ but until then we work daily with psychologists, her school, paediatricians and a dietician to monitor her mental well being and physical health. Would you manage to juggle all of that?

Eating disorders and mental health in young children are so often misunderstood. Every single day is hard to watch my beautiful baby struggle with something as basic as eating. It is heartbreaking to watch her lose weight. It is scary thinking of the future. She needs support and understanding, not judgement or pressure.

So what could you say to me instead?

How about ‘do you fancy a coffee and a chat?’ Or simply celebrate the good days with me when she perhaps manages her first ever packet of crisps or half of a banana?
We are not going anywhere. And sadly neither is her eating disorder.
Whatever the future holds I will be right there holding my daughters hand. We will get through this together.

Where does it hurt?

Where does it hurt?

Every so often I get a rude awakening that my seven year old is not like other seven year olds. Today was one of those days.

The doctor sat in front of him smiling. “Hi, when did you start to feel unwell? Can I listen to your chest? Where does it hurt?”

Questions doctors ask all the time. Questions a seven year old should understand, have a reasonable ability to answer well and have the verbal ability to communicate to a stranger.

My son continued playing his game on his iPad obvious to us all. At seven he is non verbal.

He is different. But today he was the same as everyone else in that centre. He needed medical attention. He could not wait for his regular doctor to reopen. He was unwell.

And once again I had to be his voice. As best as I could. I can not say how he is feeling. I can not say when he started to feel unwell. So I told them what I could. And that is all I ever can do.

I find myself over analysing everything. Was that behaviour he displayed a few days ago the first sign he might be poorly? Did he not finish his dinner yesterday because he felt sick? Is he sitting in my knee because he is looking for comfort or just because he wants to? How am I supposed to know?

They say a mum has a ‘sixth sense’ but this goes beyond that. When you live with a child who can not communicate the most basic of things such as pain you walk a tightrope daily. I could worry about every bruise, (where did he get that? Has he fallen and I never noticed?) every cut, (is that stinging him in the bath, what caused that and should I find it and remove it in case it happens again?) and every behaviour gets dissected like a science experiment. I become more of a detective than a mother. Or do I just let him be a ‘normal’ seven year old and be content that he is not screaming or being sick today?

My son lives with a silent invisible medical condition. But his autism makes it impossible to know how that condition is truly affecting him.

I could panic every time he is sick. I try not to. A wise doctor told me that statistically despite having a progressive genetic condition he is still more likely to have a common childhood illness such as an ear infection, a chest infection or a virus. As true and as logical as that is I still live with the worry he could be ill because of something much worse.

He has a high temperature and neither the doctor nor us know why.

Where does it hurt?

Well right now I can tell you where that hurts for me. It hurts my heart. And just as there is no cure for my sons condition, there is no cure for my hurting heart either.

Special child denied special school

I can just see the headline now on the national newspaper. 4 year old boy with tumours has no school to go to. Disabled boy denied the education he deserves. However it reads it will be a riveting story. A story of a young boy who can not talk and is completely incontinent with medical and developmental needs denied the education he deserves by his local council. Shocking. Appalling. Outrageous. But true.

Far too true and way too close to home.

Because this is the child I am talking about:

This is my son!

Isaac has severe and complex needs. He has a diagnosis of classic autism, global developmental delay, learning difficulties and a medical diagnosis of neurofibromatosis type 1. He has no speech and he still wears nappies. He did not learn to walk until he was 3. He is still being tested for a number of genetic conditions. And the law says he has to go to school at a certain age.

Isaac is due to start school in August this year. The law says he has to be enrolled in his local mainstream school which although heartbreaking, I did in January this year along with every other parent of pre-school children in Scotland. I knew he would never attend that school but had to go through the motions of producing all the necessary documents and signing all the necessary forms. But Isaac had already been put forward to the ‘forum’ back at the beginning of December the year before for the council to make a decision on where best he should be educated.

This ‘forum’ did not meet until March/April and at the end of April we were allocated a place in a very busy mainstream school with a unit attached.

We went to view it but it was very unsuitable for Isaac’s needs so we appealed and also put in a placing request for our local special school. We waited a long and agonising two months to find out today that our appeal AND our placing request have both been refused.

So we are expected to send our precious baby to a school with stairs when he can only ascend stairs with one to one support or else he crawls up. We are expected to send him to a school where he would not be getting one-to-one support. We are expected to send him to a school where he would be expected to have his lunch with almost 300 mainstream children and share a playground with the same children. Where there is no on-site nurse to be there in the event of his medical needs requiring attention. Where he would be one of 6 children with only one qualified teacher and perhaps one member of support staff.

As hard as it is for me to write, this is a boy I adore and treasure more than life itself after all, I know within my heart that my sons needs are profound. He self harms and harms others. He can escape within seconds, he eats and chews everything so presents a choking hazard at all times, he has challenging behaviour, he self stimulates, he eats his clothes, he is non-verbal and can not use sign language or pictures to communicate yet. He is completely incontinent and needs changed regularly. He has sight problems and balance problems. He has very little awareness of his surroundings. He can not call or ask for help. He can only use a spoon and his fingers to eat. He can not hold a pencil. He can only understand a few key words. He has no sense of danger.

He is a special boy and all the professionals agree he requires special education. But a group of people who hold the power within the education department, who only know about this boy through written reports, feel it is ok to deny him the education he deserves.

Could you deny this baby boy a special school? I couldn’t!

“It’s ok, I’ve got you”

It was a dry and mild spring evening, the sort you want to make the most of and get out of the house. So we packed the kids in the car, the changing bag, a few little toys and grabbed the leftover loaf of bread on the way out to feed the ducks at Lanark Loch. The park at the Loch has recently been rebuilt and we thought the kids might enjoy some time on the swings, climbing frame and slides after feeding the ducks and swans. We ‘thought’ it would be a relaxing evening. We ‘thought’ we could enjoy some quality family time together. We thought it would be ok. I never for a minute thought I would be writing about that evening days later with the emotions of it all still raw in my mind.

Naomi loved feeding the various animals and was so excited as they approached her eager to enjoy the food she was providing them. Isaac had other plans. So we did what we so often have to do in these situations and resorted to our tried and tested method of parenting these days “divide and conquer”. One parent takes the daughter and the other the son. A simple smile and nod to my ever understanding husband and he recognised the cue that I was heading off with Isaac, hopefully to the swing park. Never try and second guess someone with autism! Unpredictability should be their middle name!

It never occurred to me to check I had the essentials all special needs parents must carry at all times. In our case a watch, the car keys and a mobile phone! As I chased after my flapping, wobbling, vocal four year old who has an absolute love of water my first thoughts were along the lines of ‘will he keep his clothes on today’, ‘how deep is that water?’ and ‘even the swans have got the right idea to get out of his way!’.

But he never headed for the water. He was setting off around the loch following the path of so many dog walkers, romantic couples and runners before him. His eyes were squinted at the edge of the bushes tracking their path as they steered right around the waters edge. Totally in his own world. Totally oblivious to anyone around him. Just engrossed in an imaginary line that only he seemed able to see. I could certainly benefit from the exercise and had no choice but to follow this fascinating child who was off exploring.

He was looking at the bushes. Mum was looking out for obstacles at his feet, uneven tracks that he would never notice with eyes fixated on a peripheral imaginary line only seen by him. I was apologising to fellow walkers approaching in the opposite direction assuming this little one would move out of the way of their dog, pram or running path. But Isaac wasn’t even aware of them as he half walked, half ran in his trance like state. I was saying polite hellos to strangers. My little one more interested in the shrubbery than in people.

As he continued along and I got into his groove my thoughts began to wander as much as he was: ‘Will dad and Naomi have any idea where we are?’ ‘Are they having as much ‘fun’ as me?’ ‘Maybe after all this walking Isaac might actually sleep tonight!’ ‘wow, this place is beautiful. I’m so glad I am getting to see so much more of this place tonight.’

And then he suddenly stopped dead in his tracks! Why, I have no idea. And he screamed this ear piercing scream, a broken-hearted, confused, disorientated look on his face. And real tears. He can’t talk but his face said it all. He finally knew I was there. And he needed me. He had just walked half a mile (.75 km) in an absolute trance and suddenly reality hit and he had no clue where he was and how he got there.

“It’s ok, I’ve got you”

Half a mile is easy to walk in the cool of an evening with only the weight of your own burdens upon you. But with the weight of a 4 and a half year old, a heavy heart and all his disorientated frustrated burdens as well as your own, it is a very long way indeed. And it was right around that time that I suddenly realised I had no phone, no car keys and no watch on. Oh dear. We were alone. But we weren’t.

“It’s ok, I’ve got you”

I kept reassuring him as God was reassuring me of the same thing.

“It’s going to be ok my precious child”

He was hearing me through his tears. And I was listening through my tears too.

“We’ll get through this together.”

He needed to know he wasn’t alone. So did I.

“Look at that duck Isaac! Can you hear that dog bark?”

Sometimes we need to be distracted from our own worries.

We made it back safe and well together. I learnt that night that sometimes we can walk alone in life but at other times we just need held and carried and told by someone “It’s ok. I’ve got you.”