The Love of A Brother.

Increasing the size of your family is one of the biggest life changing decisions anyone takes. Deciding to increase the size of your family when you already have a child with special needs, in our case nonverbal autism is an epic decision. We already live in a challenging world, a world of unknowns but bringing another baby into the world was delving into the biggest unknown we have ever faced.

Whilst the future is uncertain and welcoming a second child with his own health conditions has been at times completely overwhelming, one thing that is a clear certain is the benefit our 7 month old baby has had on our 4 year old autistic son. For the benefit of this I am going to narrow it down to just 5 key reasons.

1. THEY BOTH ADORE EACH OTHER:
Gotta be honest, this wasn’t clear from the get go and the day we brought a baby home our four year old took hostage in his room and refused to come downstairs. Uh oh, what have we done!? It has been a slow burner but it is obvious the adoration for each other and their bond gets stronger all the time. How do we know? Their eyes follow each other around the room and their faces light up in each others presence. The baby has to come everywhere with us and has his own personal protective bodyguard if anyone else wants to coo over him.

2. BABY BROTHERS HAVE SUPER POWERS:
Bumped your head? Snuggling into the baby will make you feel better. Can’t figure out how to rewind your favourite singing parts on TV? Pass the baby the remote and he has it covered. Something broken? Hand the baby your toy screwdriver and broken toy and he will fix it in no time. Sneakily took some crisps out of the drawer without Mum and Dad knowing? Give the baby the packet and he will open them for you. Obviously we know that a seven month old can’t do these things but it is utterly adorable the way the four year old thinks he can do just about anything.

3. SHARING IS CARING:
Sharing things is something that doesn’t come easily for our autistic boy. He is protective of his toys and trying to persuade him to give you one of his raisins etc is almost certainly a no go. Yet, he will do all of this with his little bro, he actively shares without needing to ask. I imagine this will change once he is mobile and wanting all of his toys! Sharing activities like dancing is the best and source of lots of laughter and all around happiness.

4. RECOGNISING EMOTIONS IS BECOMING EASIER:
A typical autistic trait is not being able to read emotions. Our four year old really struggles to differentiate between all emotions, often finding people crying absolutely hysterical. However, he is starting to recognize when the baby is grizzly and will often just go and sit with him and stroke him. He will get him his dummy if he cries and he definitely seems to recognize the happy gummy smiles and squeals. If he is recognizing these emotions in him, then hopefully he will pick up others emotions and body language too.

5. THE FUTURE IS EXCITING:
In our experience having a baby has had such a positive impact on our four year old and we are so excited to watch their bond grow as they both get older, with mobility and first words looming it will be interesting to see if these have any impact on his progress.

There we have it. We have an absolute zero pressure policy on their relationship and will go with the flow with how the future pans out. We celebrate the tiniest of achievements and we don’t dwell on the imperfections. We might not be your typical family but it’s so true that love needs no words.  

School Runs and Shopping Trolleys
Advertisements

Letter to my sons nursery SENCO

Dear Hannah,

Before you rush off on your secondment to manage another nursery, I wanted to let you and everyone else know how much my family have valued you, particularly over recent months with the dreaded EHCP process. 

The Monster started at the nursery you work at as a two year old. We knew back then that he was different but we were still in the depths of appointments, awaiting a diagnosis but suspecting autism. Choosing a nursery and placing our ultimate trust in a place to look after our child with differing needs to a “normal” child was no mean feat. You were the Deputy Manager and the nursery SENCO, I knew I needed to see something in you that others perhaps don’t consider, I knew you would work closely with The Monster and I would need to interact with you more than most parents need to. YOU were the absolute reason we chose to send The Monster to that nursery. You know every single kids name and they buzz around you when you walk in the room all of them getting your attention. Your passion is evident and the needs of the children and staff alike is of obvious importance to you.

I’d be lying if I said it has always been plain sailing. There have been times in the past where I have had to have difficult conversations with you, it really bares no significance now but I have to say what complete professionalism you and the team have dealt with my grievances and how your reactions have actually had a more positive impact than the grievance in the first instance (that’s quite an accomplishment to impress the queen of complaining 😂).

I want to thank you for bearing with me when I burst into tears when you wanted to move The Monster into his pre-school class before I was ready (it really was the hormones!) It was the best move for him and he has come on leaps and bounds in that class. I want to thank you for all the one to one support you have given The Monster and all of your precious time I have taken up chasing up news of emails from various sources and various funding options.

I want to thank you for all your time in writing his reports which formed part of his EHCP, it is through reading them that I really got to appreciate that you “get” him. Likewise thank you for helping with the report I have written. I know this process has been a learning curve for both of us.

I want to thank you for being present in all the meetings we had at nursery with third parties. Those for me are difficult, it is hard talking about all the things your child can’t do. It is exhausting going over and over how your child has such significant needs that they won’t cope in a mainstream school.  I want to thank you for being the diplomat in meetings when I haven’t been able to hide my disappointment and anger when things have been delayed by weeks / months and the right people haven’t even turned up for a meeting.

Thank you for all the behind the scenes work and meetings you have had concerning The Monster and his development and for offering to come back for meetings etc moving forward.

I’m sure I won’t be alone in wanting to thank you for being one of the spearheads in giving our children the opportunity to attend an Ofsted rated Outstanding nursery. 

Best of luck in your new role (but dont take too long to come back!) you will nail it. You’ve not just been a Deputy / Acting Manager, You’ve been a friend and have made my life and The Monster’s life easier, which definitely hasn’t gone unnoticed.

Thank you so much,


The Monster’s Mummy
X X X X X 

School Runs and Shopping Trolleys

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

 

 

10 THINGS YOU DON’T KNOW ABOUT BABY/ CHILD PROOFING FOR AN ASD CHILD.

I’m taking part in the SEND 30 Day Challenge.  Today, day 2 is titled 10 things you don’t know about. 

I’m going to focus this on monster-proofing. You may know this better as Baby-proofing / child safety. The two are similar but NOT the same, as other parents with ASD (and other) diagnosis’ may also understand!

Please note this list is relevant for us here and now. It will change over time as our four year old ASD guy (The Monster) gets bigger, stronger and potentially more vulnerable

1. The best place for a TV is on the wall (RIP TV #1&2) thus eradicating the ability to knock pull it over. NB being on the wall does not make it safe, but rather makes it safER. You may want to consider a TV screen protector or armor to protect it.

2. Many ASD children are runners / escapists. Door and window alarms are quite literally life savers for many. We don’t need to invest just yet but they are definitely on the radar for later.

3. Soft furnishings are scarce and out of reach permanently.  If left within reach they get moved, put in mouth, broken, knocked over, played with etc.   

4. Our hot tap in the bathroom does not work. We have deliberately not fixed it to rule out the risk of The Monster scalding himself. He loves water and playing with taps is a must.

5. We will hold onto The Monster’s hand or use reigns / pushchair / stroller etc when going anywhere. He is not safe enough to walk in public / busy places without either being strapped down or in physical contact. 

6. I conduct Risk Assessments constantly! A visual inspection Is a minimum everywhere we go.  I see danger in things that nobody else will.

7. The Monster’s spatial awareness is limited so he still has a bedrail and  corners and sharp edges around the house are padded to prevent accidents, especially as our space is small and he can he sometimes stims (spins, bounces etc).

8. Medicines / lotions and potions / cleaning equipment etc is locked away or kept completely out of reach. You would probably expect to do this for any 4 year old, but this will likely be a permanent fixture in our house.

9.  Stools, chairs or anything else that can be used as a platform to reach  or climb something are closely monitored. The Monster is fearless and sees no danger in things.

10. With The Monster due to start school and getting a bit more independent we are looking at getting a tracker for him. In the event that he gets lost or runs off he wouldn’t be able to tell people anything as he is non-verbal. We need to be able to locate him quickly if this ever happens.


So there you have it. Are there any things you would add?



#SEND30DayChallenge

Special thanks to https://www.mumoam.co.uk for hosting the challenge. 

The good the bad and the ugly!

Anyone else feel like they are on a permanent rollercoaster!? Here’s all the aspects we would need to incorporate into a design if we had to build our own…

The Good Bits (the bits that make you scream happily, and make your tummy do butterflies!)

1. The Monster is the happiest kid I’ve ever seen.
2. We celebrate the small things.
3. He appears to be completely oblivious to any negativity.
4. He never fails to make us laugh daily.
5. He spreads autism awareness most places he goes!
6. He brings the good out in people.
7. He adapts well to most things.
8. He will randomly do something that will make you burst with pride.
8. On a good day everyone enjoys his company.
9. He can be super loving and cuddly.
10. He can nearly always communicate his needs in one way or another.


The Bad Bits (the bits where your heart pounds and you’re scared / apprehensive about what’s coming next!)

1. Disciplining The Monster is virtually impossible.
2. If you like sleep, you’re screwed!
3. “I know a song that’ll get on your nerves, get on your nerves, get on your nerves. I know a song that’ll get on you’re nerves. Get. Get. Get on your nerves”. AND REPEAT….


The Ugly Bits (the part of the ride you dread, but you know you have to go through it to get to the good bits!) 

1. It’s all just a waiting game. Nobody can give answers about how he will develop.
2. There is a constant battle against the system to get him the support he needs.
3. We still live in a judgmental world, there is a lack of awareness / acceptance and empathy for special needs.

Our ride would have lots of ups and downs, loop the loops and it would be loud and unapologetic.  You would keep coming back to ride it over and over because there are a whole lotta good bits going on that by far outweigh anything else, even if at times it doesn’t feel like it. 

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?