I put him to bed some nights and cry


Loving my son is easy, living with him is not.
Some would say he is controlling, a bully, self centred and aggressive. These would all be correct.
He is also frustrated, anxious, stressed and agitated.
No anger course, or therapy or counselling will help him.
He is 8 and can not speak. He is still in nappies. He has no sense of danger. He can scream for hours, smear, attack and demolish all in one day.
Yet he can laugh a deep laugh that is so contagious he makes everyone smile. He can flap and find utter delight in lift doors opening for hours.
He is the apple of my eye and the delight of my heart but some nights I put him to bed and cry. 
I cry for the life he is missing out on: The lack of friends, the inability to read and write, the fact I have no idea when or if he will ever be toilet trained. I cry because he is misunderstood and judged so much. I cry because he can not tell me anything like how he is feeling or what he likes. I cry because he is so vulnerable and that scares me. I cry through exhaustion having to constantly guess what he wants and why he is so upset. I cry through years of sleep deprivation, lack of support and the stress that something as simple as an open door makes him throw himself down the stairs in distress.
I put him to bed and cry because I do not want him to see my tears. I never want him to feel he disappoints me. I never want him to feel rejected or unloved. 
But I need to let the tears out. Pretending this is ok is not helping anyone.
My son has severe autism and it is very hard. My son has neurofibromatosis type 1 and that scares me. My son is vision impaired and that worries me.
His list of diagnosis and difficulties is comprehensive. He requires 24 hour care and relies on me for everything. He will need care all his life and his condition is progressive and unpredictable.
He brings me great joy but caring for him exhausts me.
Loving him is easy, living with him is not.
I love him more than words can say but I put him to bed tonight and cried.

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Why I am worried about Theresa May as Prime Minister as a special needs mum

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I am usually too wrapped up in my full time caring role as a mum to two special needs children to actively follow politics, but one night last week I just happened to turn on my TV and find out my country suddenly had a new prime minister! I don’t recall ever seeing her name on any election paper or have I missed something?

It seems in the world of politics, unlike my world of full time caring, change is common place.

Maybe it was just nervousness regarding change, concerns over the unknown or fears about the reality of living in a country that was about to leave Europe, but I watched the news about the changeover with real apprehension.

It turns out I DO have reason to be worried.

In her opening speech as prime minister I heard Theresa May speak about building a “better Britain” and I heard her go on to say “If you’re from an ordinary working class family, life is much harder than many people in Westminster realise.”

She talked about “burning injustices” like dying young due to being poor, or being paid less because of gender or young white males being less likely to enter university and I kept listening for more.

But there was nothing that I needed to hear about disability access for my children, or more help for full time carers.

So I looked at her history during her long time in government (so why had I not heard of her?) and my worries as a special needs mum and full time carer are very valid.

Like many full time carers I live in rented accommodation. Both of my children require round the clock care and it is not possible for them to share a bedroom as one has night seizures and the other night terrors. So I live in a house that the government deems to be ‘too large’ and they impose an extra tax on me for this (which we do manage to now avoid due to the significant disabilities of my children but it required yet more paperwork and fighting).
What did I read about our new prime minister?
Theresa May generally voted for reducing housing benefit for social tenants deemed to have excess bedrooms (otherwise known as “bedroom tax”).

Oh dear!

What about the income support, carers allowance and other benefits I rely on to survive as a full time carer and special needs mum? Mrs May implied in her speech that life for some is much harder than many in Westminster realise. Does she have any idea how hard life can be to be fully dependent on benefits just because your child or children are disabled and therefore need constant care. What is her thoughts on this?
Theresa May consistently voted against raising welfare benefits at least in line with prices.
Theresa May generally voted for a reduction in spending on welfare benefits.

Sigh

What about the benefits my children rely on like disability living allowance?
Theresa May generally voted against paying higher benefits over longer periods for those unable to work due to illness or disability.

Ouch

What about the rights of my children to receive education, access to treatments, support and protection?
Theresa May generally voted against laws to promote equality and human rights.

What a worry!

What about all the services my children receive on the NHS like physiotherapy, occupational therapy and speech therapy (my son is non verbal and both my children have autism)?
Theresa May generally voted for reforming the NHS so GPs buy services on behalf of their patients.
While that sounds great in principal it would require massive funding levels for GP’s given the level of service both of my children require.
I have huge concerns wether that funding will ever be enough.

I don’t normally ‘do’ politics and I am not saying that Theresa May will not be good for my country. That remains to be seen. But as a full time carer, as a special needs mum, and as someone reliant on benefits as a result of my family dynamics, I am worried.

I have a few things in common with Theresa May like being the daughter of a preacher, having a strong marriage and struggling with an inability to have children for years. I just hope that we both also have in common a belief that disability and the rights of carers MUST be a priority too.

Right now though, as a special needs mum and a carer, I have reason to be worried.

Information for this post was gathered from the following site: TheyWorkForYou.com

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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meetings, mice and playing nice…

Strange title I know but it sums up my week! It has been interesting to say the least.

I’m such a people person and I like to talk. Funny how God does things and I have two children, one who can not speak and one who doesn’t like people being near her! If I hadn’t given birth to them I would wonder if they were mine some days. God certainly has a sense of humour I believe. And if there is something I really love it is meeting other families, other parents who can relate to my journey of raising two additional needs children. So I like to frequent carers support groups, children’s clubs for special needs children and training meetings whenever I can. I tell folk it’s for the children but most often it’s me who benefits most. There’s something comforting to be surrounded by other people who do not judge, who accept your children for who they are and who want to support you. So if I hear about such groups I quickly get the diary out and see how many I can squeeze in around hospital appointments, speech and language appointments, pediatrician appointments and all the other multiple professionals who are involved with my children. And if the children can come with me all the better. It’s good for them to socialise but does me even more good to get out the house. It’s not good to be isolated. This week I have been to parent support meetings, a meet up at soft play and two children’s clubs with the kids..and it’s only wednesday! I have also taken the children to friends houses to visit too.

My daughter did announce in disgust to her dad this week though that “mummy talks too much”. Ok point taken Naomi. There are advantages to having a non verbal child…!

So if I am honest my sudden desire to attend everything and anything hasn’t just been motivated by my desire to be around people. We have had mice! And I have been terrified. We probably had them for a few days before we really knew for certain. My son has pica and chews and bites EVERYTHING. So when we called out someone to visit he wanted to have a good look around for signs of mice. The conversation went a bit like this:

“Oh there’s been some jigsaws chewed. That could be mice.” No sorry that was my son.

“I have found some chewed chocolate under the couch. That’ll definitely be mice.” Ermmm I think that was my son too.

“In your kitchen I have found what could be mice dropping.” Actually that’s looks like coco pops my son dropped. You have no idea how far those blighters can get!

“And could your son have gotten behind your kitchen bin and bitten tiny holes in a discarded tomato ketchup sachet? Oh we might actually have mice then!

Unsurprisingly he never suggested putting poison down. Oh yes Isaac would have eaten that for sure! So we lured our dear mice ‘friends’ in with chocolate spread and hide the traps as far away from sight as possible (I knew there would be an advantage to my son only seeing out one eye!) And rather than the infestation the chewed toys and food suggested we caught just 5 tiny mice. The majority of the chewing was indeed my son. But I was still terrified of those creepy mice! At least I had a funny story to tell at my next meeting!

Three days have passed now and although there is still plenty chewing and biting going on in the house it certainly isn’t those pesky creatures with four legs…just the bouncy, playful, cheery two legged kind called children.
We never mentioned our little visitors to the children. One would have perhaps thought it was a new delicious sounding meal, the other would have been traumatised. I’m with the second one personally.
And in all this the kids have been…well behaved! They have had a friend over to play and been to others houses and they have played nicely (all be it not talking or looking much at the other kids) and not screamed or had a public tantrum for days.
Maybe there is something to be said about going out more and keeping busy. And having the ability to laugh. When I ask God for more visitors in future though I think I will be more specific…