Forced onto my knees to beg for support

image

I try to stay positive. I try my best to work within the system and I am very grateful for each and every professional involved with my children. But right now I am forced onto my knees to beg just for basic support and it is disgusting.

Here are some examples:

My six year old child is non verbal. He has complex medical and developmental needs. He has a diagnosis of classic autism, neurofibromatosis type 1, global developmental delay, severe learning disability, vision impairment and pica. He attends a specialist school miles away from our home. Yet despite the fact he can not jump, balance on one leg, speak a single word, dress himself, is not toilet trained and his understanding is very limited, he is not able to receive any physiotherapy or speech therapy! You see apparently they would not ‘add value’ to what he already receives, which in fact is only one sole autism occupational therapist who currently sees us at home once every three months! So school are left to do what they can and we are left with a very frustrated, self harming, agitated child with no means of communication and a high level of care needs.

It isn’t that I haven’t tried fighting the system for him either. I fought to get him diagnosed from when he was less than a year old. No I didn’t want my perfect baby boy labelled with a life long neurological condition but I knew early on that despite policies stating support would be based upon ‘need’ rather than ‘diagnosis’ it is very hard to get the ‘need’ recognised without an actual name. And ‘autism’ is way easier to write than ‘difficulty communication, socially unaware and unresponsive and engaging in repetitive activity including flapping, rocking and self stimulating activities. In addition it appears my son is not meeting milestones expected of his age including sitting, walking, speaking and self care skills.’ Writing the latter on so many forms was giving me writers cramp!

image

So we got the diagnosis. We fought and got him his school. And now one by one the system is just dropping him like a hot potato. It seems my child is too costly. He can not enable professionals to tick boxes quickly enough, he is too time consuming. Instead they sent parents on training courses (at the parents expense), pay them £61 a week ‘carers allowance’ and leave them to get on with it. They won’t even provide my child with a wheelchair to enable me to take him out safely. Almost three and a half years ago they supplied him with a disability buggy and now this is no longer suitable no-one seems to care. Numerous referrals to wheelchair services later and once again we are still getting nowhere.

But we don’t just have one child. Our second child also has autism and she too is being failed by the same system. A recent visit to our paediatrician confirmed verbally that she is likely to have hyper mobility syndrome. This would certainly explain her joint pain she keeps telling us about, her exhaustion and her ‘interesting’ ways to sit and feel comfortable. It could also help understand her physical delay and inability to meet physical milestones.

image

It is one thing to hear your child is struggling. It is another altogether to try and secure help for them. I asked for my daughter to be referred to physiotherapy 13 months ago. Three referrals later and we are STILL waiting to receive word from them. She is forced to use her brother’s disability buggy when we are out due to pain and exhaustion (while we struggle to deal with her brother and his needs without adequate equipment) since wheelchair services are not accepting a referral for her. She is also being let down by speech and language too and is left to struggle in mainstream without so much as a visual timetable. I could have cried witnessing her standing in the middle of her class with her coat and outdoor shoes on as she tried to process the steps required to her daily morning routine. What other children did without thinking required so much more processing for her, yet no-one seems to want to help or support.

Would you believe both my children have all the necessary legal support plans in place? They have fully recognised needs and they have been in the ‘system’ for many years. They also have parents who continually email, phone, self refer and devise strategies of their own to help them. We get the grand total of three hours respite a fortnight. We get very little sleep.

I feel so let down just now. I am watching my children suffer through lack of funds and a system looking for quick fixes. I am a grown woman. I am a strong parent.

But right now I am forced onto my knees to beg for support.

And that breaks my heart.

Would you swap your hand?

image

Some years ago I was giving a friend a lift home in my car when she shared some words of wisdom, quite unplanned. She was going through some difficult times but reflected that if life was like a game of cards and we were able to fully see the cards everyone else had in their hands we would always choose to keep our own hand we had been dealt with.

There have been times I have felt unsure about that thought, feeling hard done by or feeling I have been given a raw deal in life and the idea of swapping with someone else, whose hand seems so much easier, appealed greatly. We all have times when the grass always looks greener on the other side. We look at the smile on others faces and assume the hand they have is easy and they are going to win. We read status after status on social media and assume everyone has a wonderful life because this is how they choose to paint it. Many have mastered their poker face. Years of playing the game has convinced them there is advantages to hiding their pain and smiling through difficult times. But what if you had the ability to see the full hand they had been dealt with? The chances are you would look at your own hand with a new perspective and appreciation.

There have been times I have wanted to lay my hand down and quit. As my children received diagnosis after diagnosis, my home got repossessed, appointments mounted up and nights were never-ending, quitting seemed so much easier than playing on. My ‘losing’ appearing so much worse by seeing others ‘winning’. But the fact is while you still have cards in your hand you have everything to play for. For a season I just needed to concentrate on the hands I had: the beautiful children I got to kiss each night, the roof above my head, the food on my table. A few special cards can mean so much more than a pile of insignificant ones. Used strategically and carefully any hand can be amazing for the right player.

There have been times my hand has seemed huge. I have felt blessed by friends around me, my marriage has seemed strong and my cupboards have overflowed with abundance . Many have looked at me with respect or jealousy thinking I have it altogether. They have wanted to swap hands with me thinking life must be easy for me. They have looked at things from the surface seeing only what looks like blessings. They see a new car in my drive, they see children’s toys in my garden and they see my children with expensive technology. It all looks fantastic. They think my life must be effortless. They perhaps don’t know about the times I looked on them the same way with those similar feelings. Because they are not able to see my full hand they may not know that the car is leased through a scheme for the disabled because of my child’s complex medical and developmental needs. They may not know that my son carries an iPad around with him as it is his only form of communication because he is totally non-verbal.They wonder how I can afford to stay at home instead of ‘working’ without realising my job as a carer may be unseen but it is extremely intense both day and night.

Other times it can all seem quite equal. The dealer deals the same amount of cards to everyone and the game is anyone’s call. But as each player sees the hand they have been given and does their best to turn it into a winning hand it is important to always look at your own hand as important, beautiful and worthy. Even the humble ‘2’ can become a winner to the right player. It is all about how it is played that counts.

Wether you are playing the hand of a single parent, raising children with disabilities, wrestling with health issues or struggling with huge responsibilities of caring or debt, always remember that if you had the ability to fully see the hand that others are carrying you would realise that, in fact, the hand you have is the very one you can handle. You have that hand for a reason.

I don’t know your hand in life. I don’t know your struggles or you talents and gifts. But I have faith in every one of you. I have faith you can take that hand you have and win the game. You can become a gifted player in life no matter what hand you have been dealt. Just keep playing.

Do you fancy swapping your hand? Just remember everyone is fighting battles we do not know. The other hands may not be all they seem. And if you had the ability to see everyone’s hands the chances are you would always take your own back. So keep your hand and use it to win. However long you get to play, play it well.
image

 

What if the hare doesn’t nap?

image

Most of you will be familiar with the age old story of the Hare and the Tortoise, one of Aesop’s fables. The story being that a hare and a tortoise race. Of course the hare, being by far the fastest, takes a very early lead and, not seeing the tortoise anywhere behind him, decides to take a nap. Meanwhile the tortoise continues slow and steady and in doing so passes the hare and wins the race. We can all pick out the moral easily about not being over confident in life and that there are advantages to going slow and steady.

I am a mother of two children with additional needs. We are living every day like the tortoise and moving at a very slow pace. We have missed more childhood milestones than we have reached so far. But we keep moving even if at times it feels impossible to catch up with others.

This last week my son got to go to mainstream school for the first time. Except, like so many other things in his life, it came years later than it should. And even then it was only a fleeting visit. But, just for once, I got to walk both my children home from school. It was beautiful. But it won’t happen as a daily occurrence. Because although I can dream and pray, the reality is he will never catch up with the hare’s in life.

image

Because in real life the hare doesn’t nap.

In real life other children won’t take a ‘nap’ from their development to allow him to catch up or even overtake. They won’t stop learning, or maturing or gaining new skills. Life is not a fable, and there are no fairytale happy ever afters.

But that does not mean it is all sad. It just means I have learnt to accept that the race is not for winning but rather for taking part in. We are not all equal. But my job as a parent is to make sure my children never feel like failures because they are taking the race slow and steady. It could become easy for them to become intimidated by the speed and ease at which the hares are moving along. They could get frustrated, depressed or feel overwhelmed at the never-endingimage struggle just to master a little skill others did years ago. So my job is to make a huge deal of everything the hare takes for granted but the tortoise finds so hard.

Like the fact at six years and three months old my son finally worked out how to build a tower out of bricks. So what that he failed to do this task when assessed at his two-year check up? So what that babies younger than a year have mastered this skill with ease? He moved slow and steady and finally did it. He actually got to the end of that race even if it took years to get there. They just assessed him on the skill years earlier than they should have.

Like the fact at age six his sister mastered jumping for the first time. The himageares did this before they even started nursery and they are now onto skipping, hopping and riding bikes. And most of this probably went unnoticed. But we celebrate everything in this house. We celebrate the first snowman ever built:

We celebrate every little noise that may vaguely be the sound of a word. We celebrate getting invited to a hares birthday party because being with the hares is so good and often so rare too. There were fleeting times that it was hard to tell the difference between the hare and the tortoise at the party as both sat together to share food and drink. Hares are beautiful, agile, and wonderful. Just like the tortoise is too.

The hares may be winning the race with ease but I have no bitterness or anger about that. Because that is what hares were made to do. But my children are tortoises. They are hardy, colourful, strong, like their own company and move carefully and thoughtfully. Sometimes they just hide inside themselves for a while until they feel confident.

Meanwhile the hares don’t nap.

And neither they should. Life isn’t a fable. But we can still learn lessons along the way.

Just this once

image

Those of you who follow this blog, or know me from social media, will already be aware that my six-year-old twins are educated in very different schools miles apart. As a mother you just get used to these things.

You get used to seeing different coloured school wear in the washing pile when you once thought it would only be one. You get used to doing homework with just one child when you always envisaged it would be done in duplicate. You get used to writing a daily diary for one but not the other. You get used to them leaving and arriving home at different times. You get used to only holding one little hand walking to school.

But just because you get used to it does not mean it stops hurting.

While I love both my children’s schools and know in my heart that both of them are currently in the right placements to support their needs socially, emotionally, as well as academically, I still have that vision of walking them both to school and talking to them both about their day.

It was part of that dream. It was part of that ‘deal’ when I became a parent of twins, it just seemed to be an unwritten law that my children would go through life experiences together. And some days that dream is hard to let go of.

It is the biggest irony in my life that autism separates my children to the very same degree it unites them. They both have the same diagnosis, they both share the same triad of difficulties, they both have delay in similar areas, yet since the age of two and a half they have been separated in their education.

From then on fairness became impossible. One gets school trips when the other doesn’t. One has homework every night while the other gets to play. One gets swimming, the other doesn’t and so on. But the hardest of all is when they have different days off.

And this is what we have this week. Despite both schools being in the same local authority they are having different training days for staff and therefore I have the problem of explaining to my children why one has to go to school when the other doesn’t. For the one who leaves earliest and comes home latest (and who also has the least understanding) the day when his sister was off has had little impact on him. He has no idea what she wears so never even noticed she wasn’t in her uniform that morning. But when I have to walk Naomi to school while his taxi won’t be coming for him on Wednesday I know we are going to have a problem.

We don’t do change of routine very well here. And Isaac does not do the whole ‘not going to school’ thing. He barely copes with not going at the weekend let alone on a day when he should be there!

So I have come up with a plan. I have revived my dream. On Wednesday morning I am going to pretend for one day that everything is how it should have been. I am going to take two little hands, talk to two little children instead of one, and walk to school with both my twins. Just this once.

And thanks to the wonderful staff at my daughters school I get to do it at home time too. Isaac will walk with me to collect Naomi and he has been invited into her class to meet her classmates. He will have his talker with him with a pre-recorded message for the children. I am emotional just thinking about it.
image
His sister is so excited and proud to show off her brother. The school is willing to give me time to introduce him and let him ‘say’ hello. And I get that magical experience of walking both my children to and from school together. It has always been my dream.

It may only be for one day. But I WILL get that experience.

Life is about moments to treasure. And on Wednesday I can pretend all is well.

Just this once…
image
 

Let silent words be heard

My children live in a different world to me. They have autism. I don’t. They order the world, understand language and process sensory feedback in an entirely different way to me.But because they were diagnosed at just 3 years and nine months and 4 years and 10 months old they were unable to tell me much about their world. So I took it upon myself to learn about theirs.

I bought so many books about autism. And read them all. Around 99% of them were written by people like me who do not have autism but who felt they understood what my children may be experiencing. I went to training courses about autism. They were all run by people without autism too, trying to explain something they have never lived with. But I did find out something very early on: no two people with autism are the same. I already had that figured out with two very different children both with the same diagnosis!

I wanted to know what it was like for my own two children. I wanted to know how best to help them and teach them. I wanted to be part of their world.

So I watched them. I sat with them. I held them. I listened to them even when it seemed like to everyone else there was nothing to hear. And everyday I prayed that one day they would open up to me.

This week my six-year-old explained to me a little about why she never spoke a word in nursery for the two and a half years she attended. Speech and Language therapists diagnosed selective mutism. I had no idea why my daughter was speaking so fluently at home but not at all outside of the house.

It was relaxed, accidental, and natural. As I read a bed time story to her and read a line that said ”Hi Tony!’, called Topsy, but her voice came out not quite loud enough’ (Topsy and Tim start school by Jean and Gareth Adamson). Naomi suddenly opened up. She knew how Topsy felt. She went on to share how that happens to her all the time: She wants to talk but the words just won’t come out of her mouth, how it was like the words just stuck in her throat, and sometimes her mouth could not even open up. She was scared and worried that she would get a row. She was shaking because things were new and different and she seemed so small. Her voice was scared of new people and liked to hide and sometimes she was sure she was talking because she could hear herself but now she realises it was just her brain and not really her mouth. She was worried that once her voice did come out she may not be able to control it and it might never stop. It was like someone jumped into her mouth sometimes and just stole away all the words she was trying to say.

Here I was suddenly getting a glimpse into her world. We had read this story so many times yet tonight she suddenly realised she could identify with one of the characters. And more than any book, or course, or professional input, I got to learn so much more about my daughter, her anxiety, her selective mutism and her autism.

Naomi’s twin brother is totally non verbal. I may never ever get the privilege of a night like this with him. I may never know why he bites himself, insists on mashed potato and gravy at every meal, only ever wants to wear a red school jumper or what keeps him awake all night. So I will have to learn to listen to him some other way.

Last week there was a social media campaign to support and bring awareness of non verbal children, especially those with autism. You could say that for a long time that applied to both my children, but for very different reasons. When Naomi heard about it she was desperate to be part of it. For her brother. But also for all those other children who like her have struggled to communicate with selective mutism.

I struggled to write this week. Writers block? Maybe. Or maybe I just needed to be quiet for a while and let those silent words be heard.

My children live in a different world to me. Both of them want to tell me what it is like. Only one of them can now explain that with words. The other is silent.

But let us listen. Let us put our fingers over our mouths to keep them from speaking. And let those who are struggling have a change to tell us in whatever way they can. Let us hear from our own children. Let us hear from those who struggle:

Let silent words be heard.image

What if he is still doing this when he is an adult?

image

What if he is still doing this when he is an adult?

I think about the future a lot. In fact I think about the future too much. Everyday, at some point, I look at my six years old and wonder: what if he is still doing this when he is an adult?
And because of that, even though he has autism, even though his understanding is still very limited and he has no speech at all, even though he has Neurofibromatosis type 1, and even though he is mentally much younger than his age; I have to discipline him at times.

But before I use discipline I stop for a moment and ask myself that question…what if he is still doing this when he is an adult? Because the answer to that question is what helps me decide if I need to intervene or I need to understand more.

I think it is important to remember that underneath every diagnosis my son is just an ordinary child who at times will push the boundaries and break the rules. Just like any other six-year-old he will react to being told ‘no’ and will want his own way at times. And I actually find myself getting excited when I see that. Seeing ‘normal’ in a child with such complex needs as my son is something to celebrate. But I must keep thinking of the future…

He is my son. He has special needs. And I could spend all day justifying his behaviour. He is lashing out due to frustration, he is licking the chair for sensory feedback, he is throwing things because he likes the noise, he is screaming at me because he can not talk, he is whining because he finds waiting hard…and so on.

But while it is tough dealing with some of his behaviours at six, how would I be able to cope with them at 16 or 26 when he is taller than me, stronger than me, and able to overpower me? How would I feel if he bit a support worker, or a teacher, or threw something of great value belonging to someone else? Could I stand up in court and argue his imagebehaviour is all due to his needs? Quite possibly. Because his needs are profound. But I would prefer to not have to do that.

So sometimes he finds himself on the naughty step…

Not for flapping, or spinning, or watching the same 10 second clip for the hundredth time. Not for endlessly eating mashed potato and gravy, not understanding when he needs changed or waking up through the night. Not even for wanting to go to the lifts when we are out, standing staring at the door frame when I am trying to get into the room, being unable to sit on a seat or any of the other behaviours he has relating to his conditions.

What if he is still doing those when he is an adult? Well those would just mean he still has autism and NF, which of course he will always have.

But scratching his sister in anger, throwing his iPad across the room in temper, biting, hitting, kicking, deliberate defiance, and deliberately destroying things his sister is playing with…well what if he was still doing these when he is an adult? I have to train him like I would any other six-year-old. He needs to control his temper like any child and find ways to communicate that are less violent. I need to lead the way and show him. It is a challenge for us both.

We sit together. Learn together. And when it is over we hug together and make amends.

image

What if he is still doing this when he is an adult?

Well, I will be the proudest mother alive!

We have come so far…

January is often a time of reflection for me. A new year; a fresh start. As I approach the second anniversary of my blog at the end of this month I have also been reading back at my own journey. I never knew my own writing would make me so emotional. It has brought back memories and when every day seems the same as the next, it has been nice to see that my children have actually progressed, even if it seems we have been stuck at times. And I have come so far.

When I started this blog I never thought that two years later I would still be writing. But here I am.

And as if to prove a point to me, my son chose this very week to suddenly do something he has never let me do before (well not since he was less than a year old). At six years and two months old he let me read a book to him for the first time since he was a baby.

Sometimes pictures speak louder than words:

This was what my twins looked like when I was last able to ready to them both together:

image

And this is what they looked like this week when instead of reading to just my daughter I had the privilege of sharing the moment with Isaac too:

image

We have come so far!

I also came across an old note I wrote on my Facebook account this week. I wrote it back in October 2012, a month before the children had their fourth birthday and three months prior to me starting blogging. It is a poem I wrote for Isaac and I thought it might be good to share, as even though we are still dealing with nappies and we still have no speech, it shows how far I have come and the picture I posted back then shows how far Isaac has come on too.

I’m sorry son

Dear Isaac,

I’m sorry I reversed the car today
When I know it disturbs you and makes you cry
And instead of offering comfort
I got angry and screamed at you “Why?”

When I carried you into the house
heated your milk, sat in ‘your’ seat
But forgot you won’t drink from a bottle
Just because you had shoes on your feet!

I’m sorry you still can’t speak to me
and today that was driving me mad
Your frustrations at trying to communicate
at the moment are just making me sad

Your sister set up a train set
but you destroyed it and pulled it apart
As she cried in my arms at your actions
I cried with her and just broke my heart

I’m sorry I almost force-fed you
when you refused all the options I’d tried
You were staring into space when I dressed you
But I was still so annoyed when you cried

I’m sorry you can’t look at my face
or respond when I’m calling your name
You’d rather pull out DVD’s
over and over again

I’m sorry you’re still wearing nappies
I didn’t expect it aged 4
I’m sorry you wanted to escape
when the gas man came to the door

My son I need to say sorry
Tomorrow we will both start anew
With patience, understanding, forgiveness
And a promise that I will always love you.

With love,
Mummy x

image

We have come so far!

And it isn’t just me. When your child receives a diagnosis of autism, neurofibromatosis type 1, global developmental delay, or anything else for that matter, the entire family has to learn to cope with it. And we don’t all cope in the same way.

I have struggled at times. My husband has struggled at times. But this week I caught a moment on camera that pictures the journey we have all made so well. Here is my precious baby boy in the arms of his daddy flapping and laughing with delight:

image

It has been a difficult two years since I began blogging. It has been a challenging six years since the twins were born. But everyday we are making progress. And looking back helps me see that.

My first ever blog was called ‘The journey thus far…’ Now I can look back and say with confidence ‘we have come so far’. And one day I may even be able to sit down with my twins and share some of their own journey with them. I finally have hope that could happen.