Posted in Emotions

Helter-Skelter

I think now is the time to talk about the past six months, this is not going to be a William centred post so if you want to tune out now that is fine. This is about the fight between the two sides of me. The side that six months ago was broken and wanted to curl up and die and then the side of me that needed to be as strong as two parents combined.

As most people will most likely agree with; heartbreak is one of the worst pains you can go through, you can’t take paracetamol to take away the pain, as only time can do that, but even though you feel time is all you have, you also feel that it isn’t on your side.

It may seem dramatic, but I felt like I was dying. Like my heart would not keep beating and I felt ok with that. That the pain would go if that happened.

Then there was a side of me that needed to be productive, I needed to get the house cleaner than it had ever been before, make sure my finances were in order, I needed to make sure William’s routines were protected, that he was comfortable and was not hurting like I was. I went into what can only be described as Stepford mom mode.
Between William waking up in a morning and going to sleep on the night, I was perfection; cooking cleaning, messy play and all the things in between. Smiling until my face hurt… ‘fake it until you make it’ so to speak.

Bedtime would roll around and then it was time to remove the mask, time to have my cry about all the thoughts I had pushed aside during the day, time to be broken.

The part of me that belonged in Stepford continued to make what I felt were the right decisions regarding him and tried my hardest to include his dad in these also.
The other part of me that was responsible for me, made some pretty questionable decisions and its now time to snap out of it but before I can do that, I needed to admit that I hadn’t been looking after my own health both mental and physical as well as I should have been.
I thought I would fall apart much more than I did, that I wouldn’t be able to go on but i’m stronger, healthier and much wiser. Divorce was never something I believed in, naive; I know, but now I am looking forward to starting the next chapter of my life. I am looking forward to finding out what is out there for a fat, working, single mom who may or may not have trust issues for me 🤣.

I have had a brilliant support network around me but only I could pull myself together and get off this helter-skelter slide and stand up tall again, albeit a little wobbly but here I am standing and ready to embark on my next adventure and new challenges
Speaking of which during May I have decided to partake in the 100 miles in May fundraiser to help raise money for the mental health charity Mind, I am asking that if you can spare anything, please donate as all funds go straight to the charity and its such a wonderful cause… https://www.facebook.com/donate/759292808292224/

Follow this link to donate to the Facebook fundraiser 😊

Posted in Autism In The News

Olga Freeman

I want to talk about Olga Freeman, I’m not sure if some of you will have already heard about Olga as she has been in the papers over the months, after she committed an atrocious act and murdered her autistic son after her support was taken away during the pandemic. I do not want to discuss the murder, but I want to discuss her mental health during this pandemic and not just hers but all of ours.

I cannot understand how anyone can do something so heinous, but I can understand the feelings she may have had during this pandemic and I think any parent of a child with special needs can too, in fact any parent at all…

That overwhelming sense of slowly drowning; of not knowing how you could possibly keep your head above water but in many parents’ cases we know we must, so most of us learn how to swim no matter the waters.

Lockdown has been hard for many parents, but I speak from experience when I say that it has been exceptionally hard for those with special needs kids, support was completely stripped, nurseries and schools were closed, activities and respite were stopped, appointments postponed so many times they became a mere memory and people were restricted from seeing loved ones who act as a huge support network.

I am incredibly lucky that when I became a single parent back in October, the support came in strong from unexpected places. I was suddenly in need of a support bubble and it came in the shape of my neighbours who have massively stepped up for me in a way most would not have. It came in phone calls from friends just checking to see if we needed anything and were ok. It came in doorstep drop offs from family members.

Olga did not have that, what she did have were doctors agreeing that she needed more support but the local authority failing to provide it… She knew she was struggling and actively sought help in the month prior to killing her son. I speak for many parents now when I say that local authorities are notoriously slow at providing support, if any…

Olga suffered a severe mental breakdown which led her to take the life of her son. I suppose my point of this post is to implore you all to check on your neighbours, friends and family who may be struggling but hiding it well. I’m not saying that everyone is capable of such a horrendous act, but everyone is capable of reaching breaking point.

Posted in autism and covid19, Emotions

How do you know if you are doing the right thing?

As a parent this is something, we always ask ourselves until our child reaches an age in which their own decisions can be trusted. As a parent of a child with special needs not only do you question your choices but you over analyse every decision you are forced to make but what do you do when that spills out into your own life? When the simplest of decisions can be agonising because you try to predict every possible outcome which proves impossible and life just becomes too overwhelming. When every decision comes back to haunt you?

The pressures of being a single parent to child with additional needs is immense, every choice reflects upon your child from simple things like buying a different brand of chicken nuggets by mistake or choosing the wrong school. They both seem like such opposite ends of the scale, but both have a massive impact on Williams life and the responsibility of chicken nuggets is a big one on its own without the other factors.

What if they stop making his chicken nuggets, when is the right time to introduce new chicken nuggets? I am aware it sounds crazy, but I need to think of these things and try to find a solution before they happen.

Sometimes things do happen in which there was no way you could plan ahead for. Somethings happen and take you so much by surprise that you do not know how you will recover or if you ever will but in some circumstances you thrive.

How do you deal with those situations? I feel like I have become more guarded. I feel like I have to step up and become super mom, I feel like there is a constant battle to ensure William has the best support, the best family, the right environment and so on… I don’t know if that’s a natural part of being a parent, a single parent or a special needs parent but it’s exhausting.
I am exhausted! It so hard to maintain a good balance between being mommy and being Marie and I feel like I am losing myself. It sounds daft because you don’t get a break from being a parent, it’s not a job; it’s a privilege. You don’t get sick days no matter how poorly you are or how much pain you are in, being a parent is just who you are on a fundamental level. With this pandemic its difficult to find the time to stop and take a breath. It’s not as if William can go to his Nanna and Grandad’s so that I can…🥁… have a nap. (not very rock and roll of me I know)
It’s those kinds of things that I think we all took for granted, I don’t think any of us really appreciated how much we benefited from the everyday interactions we had with our family and friends.

Posted in Brief updates

It will always be me

It is a strange feeling to know that it will always be me who will get up to soothe William in the night, always me that will get to kiss him goodnight and always me who will be bitten and hit during meltdowns. I never imagined I would have to try and coparent with anyone who wasn’t my spouse and it’s hard to have to stay in such close contact with someone who has hurt you so badly but it isn’t about me, its about William and he has and always will come first.

That being said I am trying hard to keep my own mental health a priority too, I have made it no secret that the last time I had a lot of changes in my life I had a breakdown and went to a dark and scary place but I came through it with a lot of help but only once I able to admit my feelings. I am very lucky to have an amazing support network who I can be open and honest with about my feelings. I can cry, shout and be irrational without being judged and I am so grateful for that.

There are many things that I am so thankful for right now. After weeks of practising William has finally mastered his first Makaton sign… I don’t think it will surprise anyone when I tell you it is for food. 🥗 that boy loves his grub! I am going to slowly introduce more signs and have invested in the Makaton core vocabulary stages 1-8 book, I bought this direct from the Makaton charity so that I know the money is going to the right place and would recommend anyone to do the same. I will keep you posted on any further developments when it arrives. Check out the video here.


William also got his first grazed knee, he was outside playing and fell which shouldn’t be a good thing but… it was the first time he put he hands out to stop his fall. It was not just a fall because he lost balance, he fell because he was excited and trying to run. He reached out to me for comfort and as I held him, he stopped crying. That wasn’t usually something I could do as he always sought his dad for comfort.


We are missing Big Nan loads 😥 Sundays aren’t really Sundays with out seeing her or having her Sunday dinners 🤤 I worry that when national lockdown ends we will go straight into localized restrictions. I know she is missing us just as much. When we call her and she asks William for a kiss, he starts kissing the phone. He does not do this for anyone else. Their bond is amazing despite spending 113 days apart in the last lockdown, not that I counted 😳

We have had many sleepless nights recently whether its because William is still adjusting to his new routine or because the poor little guy always seems to be poorly, he manages to pick up a cold more often than some people change their underwear. I swear that boy has had a constant runny nose since he was two years old. Then there are his bowel problems which means he either can’t go to toilet or that when he does they are massive explosions of nastiness… But with the help of lots of coffee and cuddles we have survived them.

Before I sign off I want to tell you about one of my solo fails recently and I apologise if I have told this story in a previous post…
William had a huge explosion during our first week alone, I’m not going to lie for a few seconds I freaked out. We were in the living room, so I stripped him off and made our way to the bathroom (which is downstairs) through the kitchen. His hands were covered in poop and I managed to prevent him touching anything except the bathroom door. Swiftly plopped him into the bathtub and hosed him down with shower, William hates bath time but seemed soothed under the stream of water and as there was no risk of drowning I left him sat in the empty bath running his hands under the shower head… My plan was to disinfect the door which was easily done and then quickly grab his dirty clothes and nappy so we could go straight back into the living room to continue whatever it was we were doing (most likely watching Little Baby Bum on Netflix📺) I’m not going to lie, I felt pretty chuffed with myself but as I pushed open the living room door that soon changed… there was poop everywhere!!! The dog had destroyed the nappy and my clean living room now resembled a port-a-loo at a festival 🤮 needless to say the experience was most definitely a learning curve and since then the dog is not left unsupervised with shitty nappies.

Oh and check out this picture, my DNA runs strong in this one…

The brows on us two 🤣

As always much love 😘, M.x

Posted in Brief updates, Emotions

Single parent

Did you know there are around 1.8 million single parents in the UK – they make up nearly a quarter of families with dependent children. 1.62 million of these are women. I never really thought about this until it happened to us.

I could lie to you all and say we have had an easy ride of things recently but I think you probably know that’s not the case. This is a big adjustment period for me and more importantly for William.

My main focus is to continue to ensure William has a good solid routine in place which is pivotal to him. He is keeping me extremely busy as he seems to be struggling with this huge change in his life, bed times and mornings are now only ever with me and I don’t think he enjoys them very much. He fights and kicks me when I try to change his clothes, runs away from me and screams but we get it done.

We take the dog for nice little walks (well he walks us🐕‍🦺) which William seems to really enjoy even though he is in the comfort of his stroller and flat of refuses to do any walking. I’m tempted to stay at home and just tie the dog to the stroller and let him pull it arpund the street like a sled 🛷 but I think that would constitute as child cruelty or animal cruelty. Maybe neglect? So I best continue to go with them 🤣

We are eating healthier (as healthy as a boy thats half chicken nugget will eat anyway🍗) and trying to turn this into a positive thing for our lives and look to our future.

We’ve had meltdowns and shutdowns (from both of us😭) but we’ve come through it and these are getting less and less frequent on both parts. He is slowly adjusting to his new routine and I can now see the light at the end of the tunnel but its hard. Harder than it ever was before but we are doing ok. In fact we are more than ok, we aren’t just surviving like I thought we would. We are actually living thanks to our amazing support network of family and friends.

We can not thank everyone enough for reaching out to us, the doorstep visits, dropping off shopping and just being there for us. It means more than you all could ever know 😘 Much love M x

Posted in Emotions

Alone

In the words of Akon ‘I am so Lonely’ or in words of puppet Kim Jong Il ‘I’m So RonerySo ronery. So ronery and sadry arone’

Having a baby is very misleading; when the baby is born everyone wants to know you. they visit, bring gifts and make promises they don’t intend to keep.
As your baby gets older people start to fade away and are only occasionally spotted at birthdays or christmas time.
People stop asking you if you want to meet up for a coffee or lunch because you would have to bring the baby or because you have said no a few times due to breastfeeding or lack of childcare.

Your circle continuously gets smaller as your child gets bigger.

If your child has special needs this circle practically becomes a dot, a little bit like a reversed ripple.

I’m not sure why this happens but slowly even the people who had previously part of your lives now even fail to ask about your child on the rare occasions they speak to you.
I’m not sure if its because they don’t know how to react when you say ‘Not good…’ or because they are scared the will say the wrong thing like referring to a meltdown as a tantrum or saying things like how all children do that and will grow out of it etc. I would accept things like that as I would happily share Williams story and experiences with everyone and educate people about ASD, GDD & SPD so that those parents that come after me have a slightly larger dot.

It’s a very lonely life as a parent of a special needs child.
It becomes harder to spend time with your partner and you begin to realise why separation rates are higher for parents in our situation. Its hard to maintain that spark especially when you both work opposite shifts for childcare reasons and it can be near on impossible to get a sitter (not even mentioning COVID) due to William’s behavior which can be challenging to say the least.

Exhibit A.
That isn’t chocolate! 🤮

I think its sad. Actually no, that’s isn’t right. I think it’s disappointing. I know it’s disappointing that we lose what we thought would be our forever circle.
People who were strangers a year or two ago became those we confide in not because we upgraded or chose to leave people behind but because they understand that aching pit of despair we often feel.

I know when William goes to school we will meet parent in situations similar to ourselves and extend our circle. I’m not saying that we will bond with all his classmates parents but even one or two would be a bonus.

As always I’m not sure what my motivation was for this post but wanted other parents to know that it’s not just them and we are here for you to be part of your circles if you need us 😘

Posted in Appointments

The ‘TAF’ Meeting

William was sent home from nursery with a letter inviting us to a ‘TAF Meeting’ on 5th August 2019. It was just slipped into his bag like it was nothing. What is a TAF meeting? We had no idea and no one explained it to us so obviously I turned to the internet.

The internet is a wonderful thing but also an evil thing and you shouldn’t believe everything you read from unknown sources but that didn’t stop me… phrases swam around on my laptop like. ‘child at risk’ and ‘social services involvement’
I should have just called the nursery or my health visitor and asked what the meeting would entail but my fear and anxiety stopped me. I would rather be ill informed with my head in the sand.

We are very lucky to have a great support network and my boss Debs who also happens to be my best friend (no special treatment. I promise) forced me to take the day off work to attend as initially I was going to let Dave handle it on his own which I know is really selfish of me but I wasn’t in the right mental place to hear bad news. The Hobmans, Debs and a small group of other people had slowly been dripping the idea to us that William needed extra support so that when we were finally ready to admit it to ourselves they were on hand with their knowledge which they had accumulated whilst we were busy brushing them off. We are incredibly grateful for this even though we may not have said it at the time. Without the likes of my amazing mum and friends we may not be where we are now. So please if you are starting your own journeys look at your family and friends and truly appreciate them for what they are. A support network who will sooth you when you cry, listen when you are angry and give you a life vest when you feel like you are drowning.

We went into the meeting completely unprepared and scared about what would be said and how these people would judge us. I took a notebook and made 3 notes that to this day I have no idea what I had written. Just indecipherable words.

It was after this day I made our first public post on facebook…

The post

My facebook is private and I only accept people I know well so I was shocked when I started receiving messages from people on my friends list about how they are going through the same, have concerns about their children or have been down this route and had a diagnosis etc.

I had felt so alone in what I was going through and had no idea there were so many others out there. I decided I would keep posting updates so people could follow our journey. It then stopped been because people were mean behind our back and became about reaching out to people like ourselves.