Forced onto my knees to beg for support

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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!

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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.

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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.

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Would you swap your hand?

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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.
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What if the hare doesn’t nap?

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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.

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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

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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.
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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…
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