Posted in Open Letters

A letter to my son

William,

1578 days, that is how long I have loved you, and that isn’t including the time I grew you inside of me, but I assure you; I loved you just as much then as I do now.
I have spent a total of 8 nights away from you, that’s only 0.5% of your life but from Saturday and until you start school, we will spend 28.5% of the week apart.

I would never have said a year ago, that I would be awake all night trying to comprehend these figures and telling myself that its going to be ok, that you will ok without me, that I will be ok without you.

I’ve spent almost 10 months thinking about how badly I need some time, ‘a break’ so to speak but I just wanted your dad to do his share because for the first four months through no fault of my own, you hated me. I could feel it and believe me, I didn’t like myself very much either at that point, but we got through it. The change in your routine blew everything apart, you struggled to eat, you lashed out and broke things, you cried, and I was beginning to think you didn’t know what sleep was but after 122 days; you slept. You slept in my arms after hitting me and yourself, but you slept, and it was a breakthrough or maybe a breakdown but you slowly got on board with your new routine and life got easier for both of us.

And here we are now, we have a good routine in place which is about to change once again and I don’t think either of us are ready for it but it has to happen.
I never wanted you to have two ‘part-time’ parents, two houses or any of the other things that comes with separation. I wanted stability for you, I know how much you need that but somethings are beyond our control, but I tried and I want you to know that, I tried… for you.

What if you need me and I’m not there? What if you seek me for comfort in a strange new environment and I’m not there? I cant always be there but I wish I could and I needed you to know this. You maybe don’t understand this now but when you are older and can maybe read this you will.

You are without a doubt, the best thing that’s ever happened to me, my greatest achievement and the love of my life. I wouldn’t be the person I am today had I not had you and I am forever grateful for you and everything you are.

I love you in the morning and in the afternoon, I love you in the evening and underneath the moon 🌙

Posted in Appointments, autism and covid19

The Dream Team

As a parent of a child with special needs I often feel judged, judged by those who are in positions to support us or judged by those who don’t understand. It shouldn’t matter, but it does. Peoples opinions still effect all of us whether we are willing to admit it or not.

I dread people coming to my house, not just because of the Covid situation but because it makes me uncomfortable. We recently had an appointment with ‘the sleep team’ and a woman called Rachel came to our house. I’m immediately on edge because she is coming in my house, what if she sits there judging us? Don’t get me wrong, my house isn’t unclean but it is most definitely lived in and you are bound to step/sit on some abandoned snack or cockle over on half an egg shaped toy but its home, its where we make memories and I personally wouldn’t want it any other way.

She comes in wearing her full PPE gear and sits on the floor. Who does that in a house with both a cat and a dog? Even I don’t sit on the floor… it looks clean and gets hoovered all the time, but you always end up with a nice coating of ginger fur anyway.

I’m not sure if I have mellowed as time has gone by but I really liked this woman who is now in a list of recent professionals who have managed to put me at ease in a very short space of time. Maybe I’m just not as neurotic as I once was.

I have done so much research about sleep regression, sleep avoidance, ways to assist in sleep, the works to be honest, it started maybe a year ago when William decided he no longer wanted to seep like a log.
A little context is maybe needed here… William has always slept through the night, right from the moment we brought him home from the hospital. We used to give him a little poke to make sure he was ok because he was so still. Oh, how I used to brag about the fact he was an amazing sleeper! This is my payment for being a smug bitch.

Rachel spoke to us about Williams routines, his behaviours at bedtime and through the night and asked us about steps we have put in place to try and ensure he gets some sleep.

William struggles to get to sleep, he struggles to stay asleep and seems to only need between four and five hours a night

There is a huge list of things we have tried and failed. Hours of research and expensive bits and pieces to help him settle but to no avail.

What really made my day is that Rachel said we were doing everything right ☺ us… who feel so inadequate at times doing it right. She said we had a good team between the two of and seem to communicate well and work together… I almost fell over, but it did really make my day.

The only downside to this is that she couldn’t offer any further advice however she is going to speak to the KIDS charity and see if they can offer anything further. This to me indicates that medication will be the next step and I don’t think I want that for my child, but we will have to cross that bridge when we get to it.

She is coming back on the 8th so I will keep you updated with any developments

Much love, The Buckleys 😘

Posted in Emotions

Why do you hate me?

Its been a tough few months recently, William seems to have regressed in his behaviours and seems to be lashing out at me more than usual. Not his dad just me… what did I do? He purposely scratched my face when he was frustrated which I’m not going to lie hurt like a motherfucker! the valuable lesson I have taken from this is to make sure I keep his nails short however cutting them is an awful and thankless task. Imagine if an octopus had claws on each tentacle and you had to avoid 7 of them whilst pinning the other one down, that’s what its like cutting his nails. Except that the octopus is screaming and biting to get away from you.

We have had a full on meltdown because I wouldn’t let him eat ‘another’ packet of Parma Violets. He went to find more and threw them all over the floor before throwing himself down too and refusing to get up… I tried to lift him but he’s very smart and makes himself go all floppy! considering developmentally he is less than a year old he does show some terrible two’s traits which we were told is a good sign (insert eye roll here 🙄)

His sleep is very disturbed now. From the moment we brought him home from the hospital he slept for 7pm until gone 10am and we had to wake him up not the other way round. People called us lucky. I don’t feel lucky anymore. He goes to his room at about 7 to 7.30pm and precedes to destroy his bedroom for a good hour or more. Draws opened and emptied, everything he can physically reach ends up on the floor and in pieces. Juice everywhere and if we are very ‘lucky’ he will often smear the contents of his nappy around the room. Three times in a week we’ve had to hose the boy down in the shower and disinfect his room and carpets ready for the next day… we go through a lot of sheets and a lot of wash powder. The washing machine is always on.

Speaking of hosing the boy down, its a 2 man job to bathe him. It sounds awful but it takes one of us to hold him down and the other to clean him. He needs to be held because he starts having a meltdown and can fall and hurt himself. To put it into context some days I feel that bathing a feral cat would be much easier and less painful for all three of us.

He has gotten to a stage now where he doesn’t want to be wearing pants… he will squirm and kick out when trying to put either a nappy or trousers on him and when they’re on he will walk round in circles trying to pull them off until he has succeeded. This was cute the first few times but once he peed all over my Nans DVD player it wasn’t! I thought about braces for him but he cant handle restrictive items so I’m not sure if that is the way forward? I suppose it is just going to be trial and error.

His follow up appointment at the eye hospital has come through to double check his vision. That’s in likes a week time, I am praying they don’t need to use the drops again as he couldn’t handle the disorientation last time and was a nightmare with his saucer like pupils 👀

His return to nursery after the holidays went just as expected. He clung to Dave for dear life despite often not wanting to come home. He has become accustomed to his non-routine over the Christmas break and didn’t want to be away from us. Dave had to spend an hour at nursery trying to calm him down.

I think the support available now from other parents in similar situations is amazing and one of the main reasons I started this blog. There are groups to arrange to meet up or if like me you are antisocial there are just groups to read other experiences and ask advice and support of those who have already been there. There isn’t enough support professionally which can leave people feeling alone and isolated, don’t get me wrong the nursery and Williams health visitor have been amazing but there doesn’t seem to be anyone else at this point in time which is daunting. It feels like it is one person referring to another to another and so on. It feels like they’re passing the book so to speak. I know this isn’t necessarily the case but so many people need to be involved before something happens that it feels like a never-ending circle.

We have an appointment a week for the next three weeks so hopefully we will take a step forward soon. Even if it’s just a baby step 👣

Posted in Events & Holidays

Jingle Hell 🔔

Christmas is a hard time for kids like William, kids who can’t take on board change and who become overwhelmed easily. His weeks are usually as structured as we can get them to prevent meltdowns or what I like to call ‘hunger strikes’ he ends up so upset and out of sorts he won’t eat anything and anyone that has witnessed William with a Sunday dinner knows this is a big thing for him to refuse. His nursery will give him second helpings of all his meals to stop him taking other peoples… I think I should be embarrassed of this, but he definitely takes after me 🤣

MondayDad takes him to nursery
TuesdayDad takes him to nursery
WednesdayOne on one time with dad and then grandad
ThursdayOne on one time with Mummy
FridayOut and about with Mummy
SaturdayFree for all or a trip with Danielle
SundayVisit Big Nan

William hasn’t been to nursery since 23rd December and isn’t due back until the 6th January. I hope returning won’t set him off as much as not going has as he is only just calming down.

Christmas eve was fine. We went to spend time with Harry so they could hopefully wear each other out and William was almost well behaved except the usual, eating paper, throwing food on the floor and trying to destroy all Harrys toys but on the night he slept like an angel. 👼🏻

Best buddies

Christmas day was a completely different scenario. As we go to my parents it means he needs to get up much earlier than usual which never goes down well, especially as on a Wednesday he usually gets a lie in.

He didn’t want any breakfast or chocolate… yes, I’m a bad mom by trying to bribe him to eat and I’m not ashamed but even that couldn’t tempt him.He opened a few gifts and wasn’t interested after the paper was gone and then decided he had had enough and didn’t want to open any more. Didn’t want to get dressed. Didn’t want to leave the house. Needless to say, we were late to my parents. ⏰

I guess we didn’t help the situation and our living room was a massive sensory overload. I didn’t even think about how he would react. I just thought about how as a kid I was always absolutely buzzed to see all my new toys at once and couldn’t wait to start tearing things open or playing with them. William was absolutely spoilt and not just by us; there was outdoor equipment, a wooden kitchen, a train table, a bubble tube and so much more! That little feeling of pride burned inside me. We did this. We shopped around and bought bits all year. We have well and truly outdone ourselves with Christmas this year! But that’s was the problem. It was more for me than William, next year will be different as I know I was selfish by giving him too much. That wasn’t for him. That was to make me feel better. Next year I will do my best to ensure Christmas is focused on what my child wants and not what I think any child wants as there is a big difference.

Boxing day was a blur and we went to see William’s Great Nan in her nursing home. William didn’t eat all day and wasn’t interested in his Great Nan. It can be heart-breaking as I know Dave would love to see William cuddle his G.Nan and acknowledge her but he just isn’t wired that way.

By the 28th he was eating properly (also classed as ravenously) and seemed to have settled. He has slept so well for the first time since Christmas eve and he must have been running on fumes and frustration since then. I literally thank god that he is getting back to himself but then panic sets in as I don’t want him used to this kind of routine as it isn’t a routine at all.

And now we are on to today, New years day 2020! The family are all together except Dave who must work, and William is his usual happy self. He’s laughing, playing and cuddly. He eats his dinner (and mine) two desserts and then some. 🍽🍽🍰 and now we are at home and he is fast sleep.

Happy new year William!

Our new years resolutions as a family

  • Be open and honest about William and his progress (we started this one early)
  • Continue to be proactive in fighting for Williams referrals and needs
  • Spend more time as a family
  • Come off my medication

I have been on antidepressants for over 18 months and I finally feel in a place where I am ready to come off them. I understand and accept my child, I am happily married to man who would walk over broken glass for us, I have a new job that makes me happy to go to work and I have a wonderful support network. I had almost all these things before however there were so many changes in my life I couldn’t handle it.

This last year or even decade hasn’t been easy for us as a family but 2020 is going to be our year. We started our journey in 2019 and are fully prepared to stay on the ride.

To be honest we wouldn’t have it any other way! 👪