Dear Prime Minister…

Dear Theresa May PM,

Presumably, you get many hundreds of letters with regards to state benefits. I feel compelled to write following some unexpected situations life has thrown at our family.

Let me explain…

I’m educated to degree level with a Business Management degree and over a decade of post-graduate work experience where I worked from junior positions to middle/senior management in private sector organisations.  I am a dedicated, loyal and hard working person and at 35 years young and have many, many years left in me to advance my career, contribute to society and most importantly (personally) to support my family and give them a good life.

In 2013 I gave birth to a beautiful boy who I had longed for, way before his arrival. He was, and indeed is perfect. Following some evident differences between him and his peers when he was still only small we embarked upon a long (two year) diagnosis process where eventually it was confirmed that he has Autism Spectrum Disorder.

He is now four years old and is nonverbal. He is not toilet trained. He has absolutely no awareness of danger. He does not sleep well (ever) without medication. He has no interpretation of emotions. He has more energy than anyone I have ever met. He should be starting school in a few weeks but he is not as mainstream schools can’t cater for his complex needs and despite the fight I put up to get his paperwork in place for a specialized school, I was defeated because the Special Education Needs (SEN) budgets are so scarce and workloads so vast that they can not meet the legal time frames to get things in place.  He needs around the clock care. He is my full-time job. This year we also had another beautiful baby boy. He has his own health conditions which I won’t go into other than to say he needs frequent medical check-ups and will do (likely) for life.

Nobody plans on becoming a special needs parent. Nobody. You don’t visualize the future caring for your child for the rest of your life. Inadvertently you are training them to be independent from a very young age.

Because of all of the above, I am unable to get a regular job. I want a job so desperately but only being available for a few hours a day, term time and with the likelihood of unforeseen absences due to therapy  / medical appointments and sheer exhaustion after stints of months of severe sleep deprivation I don’t seem such a sexy choice for any employer.

I’ve recently resigned myself to having to consider the Government funded Carers Allowance. I am insulted. A mere £62.70 a week is pitiful.  Particularly when you consider the hours of above and beyond care needed, equating to what, in my experience is much more demanding, tiring and time consuming than any job I have ever had. To qualify for carers allowance you need to care for someone for at least 35 hours a week, let’s say that you care for someone for just 35 hours that equates to £1.79 per hour! And let’s be honest when you live 24/7 as a parent of a special needs child, you are never off duty. Never.

As I’ve already pointed out, I want to work. Actually the dream is to go solo and to set something up to benefit others who are in similar situations to myself. To provide a service that is so desperately needed so that people don’t  feel so alone and isolated as I have the last couple of years. To bridge the gap in my community where funding has been stripped so much that disabled people are excluded from society for outrageous reasons like there not being any Changing Places toilet facilities. I spend, quite literally hours every day thinking about this and how I can make it a possibility. But the reality is hard. Made even harder because in the time I have been unable to work I have spent savings and have some debt so again, I appear unsexy to any bank whom I would need to back me. Let’s not beat around the bush, there would be no surplus to put aside from the Carers Allowance to help.

I am becoming reliant on the pittance you provide – through no fault of my own with no future in sight. More is offered for Job Seekers Allowance. Why? Why give more money to people that can work – but often choose not to – and I apologize for generalizing. I know from personal experience this isn’t always the case. I am stuck and angry. Angry that more isn’t being done to help some of the most vulnerable in society. Angry that because there aren’t enough services to help my son so that I can get a job more easily.

I ask that you consider revising the Carers Allowance, one day PM you may need a carer, or you may be the carer. You won’t choose this, circumstance will. I ask that more is done for carers, more help and support is offered so that people like me don’t feel a burden to society. The thought of this being it for me is petrifying.  How is it that I know more about prisoners being given help and support to be integrated back into society when I know of nothing that helps carers?

Kind Regards,

 

A Special Needs Mum

 

 

Face of Mum

You will only see this on here once. A tear stained, blotchy face and stinging red eyes. Not an uncommon occurence in reality but a face of mum that you can’t see behind a keyboard.

Today we have spread autism awareness everywhere we have been. It would be great to be able to pick and choose where and when we do this, like I can on here but in reality we can’t turn autism on and off.

This face of mum has been up since 4am this morning (aside from the sleeping with one eye open until finally relenting and putting Cartoonito on at 6am). Apparently that’s an acceptable time to start the day – not for the first time in recent days. A 4am start combined with 3 get ups for The Small One through the night no less. 

This face of mum has been on a playdate with friends this morning.  A pang of jealousy ripped through her for their seemingly normal life. Four year olds playing together nicely in a bedroom. Parents eyes not fixated on every move their child made. She hates that feeling of jealousy but the feeling of guilt for feeling it in the first place is worse. The Monster was golden until it was almost time to go and he spread a sprinkling of autism awareness in the form of running at lightening speed through the house, escaping upstairs and trying to then come down unaided, shouting, refusing to put shoes on, slamming doors, lying on the pavement and refusing to walk to the car.

This face of mum has taken the boys to the Dr’s where The Small One had an appointment for his jabs. Here he spread his usual autism awareness by turning the self check in screen on and off and caused havoc in the waiting room, with the additional excitement of some furniture being brought into the surgery. Game over. Luckily they were then given a private room to wait in and the lovely nurse gave The Monster a pack of sweets whilst The Small one had his injections. After playing with the taps and a splash of water around the room later they left having only received a couple eye rolls from the elderly couple in the waiting room.

This face of mum instinctively let go of the pushchair for 3 seconds max to check The Monsters hands whilst walking home and he rubbed his hands through a thorn bush. In those three seconds (max) the pushchair had free rolled into the road and was still moving. Thankfully there were no cars coming.

This face of mum has received post for yet another hospital appointment for The Small One. As usual on a day The Monster is not in nursery. This mum can’t deal with thinking about that today.

This face of mum has had emails from The Monster’s Educational Psychologist today delaying an appointment made for June by almost a month and also wants another meeting in less than a weeks time, looks like she will be facing that one without Dad again.

This face of mum has packed the boys in the car and driven until they have both fallen asleep just so she can catch her breath today.

Today, this mum craves normality, an easier carefree life for her babies. 

    

This is Our Normal

Do you ever wonder what other people’s normal looks like? How their life differs to yours? Something you consider to be so ordinary but to others it really isn’t? For example, it wasn’t until I went to uni that I found out mash potato on a Sunday Roast was considered weird  (at least in that neck of the woods) and I thought all bathrooms had a bottle of Fairy Liquid in during the 80’s….apparently everyone else actually used bubble bath. Who knew!? 

This week I have been forced to look at our families normal just because of the timetable we have run. Here’s 10 things that are considered  absolutely normal in our house that I suspect aren’t in yours:

  1. Our children (4 months and almost 4 years old) get more post than us. Medical letters, letters regarding education and appointment letters. So many appointment letters, for both kiddos. 
  2. Both children have prescribed medication everyday (and they both love it!)
  3. Getting by on an average of 5 hours (often broken) sleep a night is considered winning.
  4. I get asked regularly what support we get. I have been asked this three times this week alone from professionals. The answer? None. We go it alone (not through choice).
  5. Changing a nappy on a baby changing unit in disabled toilets for someone whose head and torso only just fit on the unit. And he is growing, but facilities for him aren’t.  
  6. Having one child with severe autism which has an impact on every aspect of our lives.
  7. Having another child who has, since birth been in and out of hospital. He has just been invited to participate in the national Genome Project, spearheaded by Birmingham Children’s Hospital because he has a rare condition. 
  8. Using pictures and sign language are  the best forms of two way communication between us and our autistic son.
  9. Parents never having a night off (parenting) together. Ever. We have never both spent a night away from the kiddos together. I can count on one hand the number of nights I have had away (apart from when in hospital having the second).
  10. Finding things lined up everywhere.

What things in your life do you consider normal but to others really aren’t? 

    ​YOU ARE THE UNKNOWN

    You are the unknown in my sons life,

    The wait and see, 

    The summit of a mountain we are yet to climb,

    The thing that needs so many questions, yet gives no answers.
    You are the thief of my sons voice,

    The reason he can’t tell us he loves us,

    The fidgety cuddle,

    The line them up, tower them up, break them up,

    The not always recognised disability. 

    You are the destiny to our lives,

    The unstopabble force,

    The energy that never burns out

    The bounce as near to the edge as you can,

    The countless hours of laying awake in bed.

    You are the most obvious in a crowded room, 

    The unstoppable tears falling,

    The worry for the here and now,

    The worry for the future,

    A spin, 

    A flap,

    A grunt,

    A sign,

    The hide under the covers and get away from it all,

    The squeal at the top of his lungs,

    The uninvited guest who turned up out of the blue,

    The re-writing of our “happily ever after”
    Autism, you are the unknown. The most unknown member of our family yet you’re welcome to take us on our journey.

    Is it OK to hate my child’s autism? 

    I love The Monster more than I will ever be able to describe. To Infinity and Beyond. To The Moon and Back. I would lay down my life for him. You get the picture. But that doesn’t mean I always like what his autism does to him. Ouch I feel guilty even writing that. 

    It’s taken a long time to admit to myself that there are things that I plain and simply don’t like.  What autism does to him. Of course autism isn’t all bad and I wouldn’t change him for the world. If he could have a magic pill to make it all go away I don’t think I would give it him. 

    There are only two things that I really don’t like. Only two, that’s not bad considering it has a bearing on his whole being. 

    1. Speech. I hate that it has ripped away the ability for him to talk. I don’t know if this is forever but I am a realist and I know that he perhaps won’t ever talk, at least not like a ‘normal’ person. I hate that I might never hear him say “mummy”, he might never be able to tell me he loves me. Telling us he is hurt, sad, happy etc can be done through other means, i.e. body language, signing etc but telling us why is more difficult. I might never get to hear if he has an accent (although to be honest, who wants a brummie accent 😜). I hate that we might never be able to talk over the phone. I even feel sad that his friends and peers can call me by my name yet he can’t. 
    2. Inability to follow instructions / listen! The Monster does what he wants, when he wants contrary to what we tell him. We are forever giving him instructions, more often than not for his own safety. We yell “slow down” a lot. He runs everywhere. we gasp at all the near misses he has because he is going to fast and not looking where he is going. How we haven’t ended up in A&E yet I don’t know*. I feel like I am constantly giving out a negative vibe since “Don’t do that” and “No” are probably the most widely spoken words in our existence! He doesn’t learn from experience so we have to repeatedly give out the same instructions. For example: “Don’t touch the TV” – he’s already broken two and do you think we can stop him messing with it? Not a chance. The most stressful thing in the world is visiting people and new places since instructions to not run wild around peoples houses, to sit and chill and / or play with toys falls on deaf ears. 

      And you thought sleep was going to be up there with the things I hate didn’t you!? 

      Would you admit to things you don’t like about your child? Does it make me a bad person for not liking these things? I don’t think so, I feel guilt of course but autism isn’t all bad. Challenging yes. Happy, unpredictable, fun, quirky and fascinating. Most definitely. 

      *in hindsight I should’ve taken him to A&E when he found the only bit of metal in a soft play. He fell and hit his head good and proper. Even now, about 2 years on you can feel the lumps on his forehead and if he bangs his head (quite often) it’s a cert it will be in the same place!  

      You Don’t Know. My complaint to Lloyd’s Pharmacy.

      Dear Lloyd’s Pharmacy,

      You Don’t Know:

      You don’t know what kind of day I have had, you don’t know that my 3.5 year old son and I have spent an hour and half this morning at hospital whilst I had an antenatal scan. You don’t know that I was dreading that appointment because I had no alternative but to take my son with me, knowing full well he would be a handful. You don’t know how pleased I was that the only mischief he caused was turning the scan monitor on and off throughout the scan and lining his toy cars up on top of the bin, despite me telling him countless times it was dirty.

      You don’t know that we went straight to the doctors so my son could get seen for his spreading rash immediately after my hospital appointment.  You don’t know the relief I felt when being told there was a zero minute wait, and then my rising anxiety as we were still waiting to be seen 25 minutes later. You don’t know that during this time I struggled to keep my son entertained and he fell over not once but twice in the waiting room resulting in lots of tears and uncomfortable cuddles as he clung to my 32 week pregnant belly.

      You don’t know that our visit to the pharmacy was the third outing in the car today. The third time I had heaved my son into his chair whilst he struggled as he thought he should be driving.  You don’t know that I was dreading my visit to Lloyds, not least because my son tries to rip all the products off your shelves and stack them his very own way.  You don’t know that the reason I took him out of the pharmacy to watch the buses outside was to save your pretty displays.  You don’t know how much I wanted to get home and back to our ‘safe haven’.

      You don’t know the rising anger I felt when your practitioner handed me one prescription and a sticker for the other telling me it wasn’t in stock but would be available to be picked up later this afternoon.  You don’t know that I didn’t want to come out of the house again today, that I didn’t want to contend with getting shoes on and getting into the car again for my son to once again try to re-arrange your shelves and for me to try and persuade him to watch the buses again.

      You don’t know that by giving me the prescription back I could have walked 5 doors down the road to an alternative pharmacist and got the prescription there and then without the hassle of an extra journey to my day. You don’t know how livid I was when I asked for the prescription back instead of the sticker and you refused to give it me because the order had been placed leaving me with no alternative but to come back and collect.  You don’t know that I when I returned an hour and half later I would be expecting it to be ready, you then told me it would be ready after 16.30 (another 3 hours to wait). You never told me this when you gave me the sticker in the first instance.  You don’t know that when I tried to complain whilst nursing my 32 week pregnant belly and my son on my hip (to save your shelving once again) that tears were pricking my eyes because facing coming out again was the last thing I wanted to do.

      You don’t know that my son is autistic and such journeys and eventful days are stressful.  You don’t know because you assumed.  You assumed I would be cool with receiving a sticker instead of my sons cream. You assumed that it would be ok for me to watch him itching for a further 4.5 hours and him not understanding me telling him not to.  The staff were rude when I complained even though the error was on your part.  You should have given me the option of going elsewhere, you should have told me what time it would be ready.  You don’t know this is the second time in so many days that you haven’t had the stock I needed.  You don’t know the little independent pharmacy 5 doors down have received my business and will continue to do so.

      You definitely should know customer service. Shame on you Lloyds.