Posted in Brief updates

Lets have a catch up – November 2021

Do you know what I want, what I long for?

Its sounds terrible but I would love for William to call out for me in the night… ‘Mom. Mom. Mom’ for him to need me to help him get settled. For him to want to be in bed with me and find comfort in my arms.

I speak to other parents, some who say their child will not settle without them, some who relish in the closeness and some who refer to their children as a barnacle come bedtime 🤣 some tell me I’m lucky, but I don’t feel it. I have a child that on one hand doesn’t need me but on the other needs me more than children his age usually do.

William rarely reaches out for me for comfort or safety… he finds this himself by going to a safe place on his own and shutting down. This could be his bedroom, the armchair in my living room or his stroller but never in me. Are we right in the need we have in relation to our children? I suppose it all comes back to the expectations we hold based on other families and what we see on TV but my child isn’t like other children and he isn’t like Sheldon Cooper or Joe Hughes and sometimes I struggle to get passed that but on other occasions I embrace it.

Hull fair was here 🎢

I took William with the guy I am dating and his daughter (Little Miss)… we had initially planned to go on the Thursday which is our standing playdate but William was having a great day on the Saturday so we went early which worked out so well.
The fair was busy as it was its first weekend day but since we went for about 2pm, it wasn’t as busy as it would be later in the evening. Both children seemed to love it.

It was the best picture we were getting 😂

Sadly there weren’t really any rides that I felt William would be safe on to ride on his own but he most definitely enjoyed the food and the atmosphere.
I used Williams parking pass for the first time and it made things so much easier, we paid to park but used the disabled section which made getting William out of the car into his stroller really simple, purely because it removed an anxiety I usually have about potentially damaging someone’s car.

As we walked round the fair and watched Little Miss go on numerous rides, William was smiling and clapping his hands with joy. Granted its sometimes difficult to tell because of his face…

Happy face, I promise.

Believe it or not, William wasn’t possessed in this photo but was in fact super happy because he had visited the girls next door and claimed their bed 🤣
This was how he looked during our walk around the fair, this was only his second ever visit to the fair but he remembered the sugar doughnuts very well as you can see.

2019 v 2021

It’s a nice little tradition for me and William but one we can hopefully continue with Little Miss, we both enjoy the lights, music and food. Despite the anxiety that comes with it, it is most definitely worth it, and the highlight of our October before Halloween. I love Halloween, my dad used to turn the lights out and ignore the door much to my mom’s dismay, but I am the complete opposite; pumpkin out and little goodie bags for the kids. This year I had my little vampire to help me.

I want to suck your blood eat your candy

He wasn’t a fan of coming to the door with me but loved playing with the bubbles in his goodie bag and eating copious amounts of sweets. 🍬🍭

Williams Pica seems to have gotten worse and he is even more determined to eat his nappy, after a frantic phone call to 111 due to his poop being full of nappy crystals, I discovered they are none toxic and as long as he isn’t being blocked up by them, then he will be ok and based on previous issues, I am a pro at establishing if he is blocked up… I do not want to go through another regime to clear him out. 🤮 I’m a little lost regarding how I stop him eating it as he is soo determined. During the day I can run interference, but I cannot seem to stop him on a night, he has adaptive sleepsuits (these zip up in the back) and baby grows. I’ve even been putting a pair of boxers of the nappy to restrict access, but nothing seems to stop him, and I don’t feel like there is much support out there for this.

I chased up his school place only to be told there is no update, and they will let me know when they have one, but I won’t be fobbed of that easily and will be chasing each month after their allocation meetings going forwards. We will not be forgotten about. I also chased the sensory pathway referral as that has been a non-starter since it was mentioned in July and am awaiting an update.

William was back at the eye hospital last month for a check up and just like every other time, he didn’t cooperate, and they cannot dismiss him as a patient until they can conduct a full test…. They think all is good but don’t want to take any chances which is brilliant of them.

We have an upcoming paediatrician appointment next week and an impending review with Williams senco and nursery so I will make sure to keep you all posted on those.

No update on wheelchair services although William’s dad is chasing them; they initially offered us a wheelchair which isn’t practical for William, so we asked about a new adaptive stroller instead and are awaiting their decision. It only took a year after the referral to get this far 🙄

And finally, the dreaded DLA renewal has thumped onto my doormat, so I have lots of tears incoming due to how brutally honest you have to be, although you never know, it may be easier for me this time since I started sharing our journey… who knows 🤷‍♀️

All our love as always 😘, M. X

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Posted in Emotions

My own journey

8th January 2018

Look at this girl and analyse what you are seeing. A happy young mom holding her sleeping baby posing for her husband to take a photo… but that’s not whats really happening here.

It was my first day back at work after almost a year off. I woke up early, did my hair and make up to plaster over the cracks of how I was truly feeling.

I remember feeling relief as I left the house; like a huge weight was lifted off my shoulders. I could finally be away from William. My job has always been a constant in my life, since I was 17 so I felt like I was going back to do something I was really good at and since that wasn’t how I felt about being a mom, it made me really happy.

Only it wasn’t a relief, things had changed and people had left and I couldn’t focus on any one task. I was now part time and there weren’t enough hours in a day. I was constantly chasing my own tail. I remember coming home and faking excited to see William… I should have missed him. I held him close whilst he nodded off and had a little cry because ‘I missed him’ only I cried because I didnt. I cried for me. Not for him.

‘Take a picture Dave’ I don’t have many pictures of William and I over his first 2 years purely because I was alway the one behind the camera (This made post separation purging a nightmare🤣) I felt it was important to take a picture and prove that I was OK. That I was happy. Its silly isn’t it, that’s what this social media age has done to us. I think that’s why on here I try to be as honest and open as possible.

I’m not ashamed to say I was I was spiralling down a very dark hole and ended up at a stage I couldn’t see the light. I worried about my family dying when there was nothing wrong with them but the thought consumed me and kept me awake at night, I couldn’t cope with the changes is my career and found myself struggling to do the most simple of tasks but faking it with a smile and a cheery attitude. William was missing his milestones and I thought it was my fault, did I do something wrong during pregnancy? Was it because I didn’t love him enough? I began focusing on the fact that he might be taken away from me, social services would somehow get involved and take one look at me and know that it was my fault.

William was 18 months old and I had reached a point in which I felt like things would be better if I wasn’t around anymore by the time I sought help. I spoke to the doctor and just sobbed, I don’t know how he could possibly understand what I was saying but he listened and offered me help and I personally chose to be medicated, Sertraline to help with my depression and Propranolol for anxiety. It was hard, really hard and I came off them early and I wasn’t ready and soon spiraled back down that hole but I knew… I knew I wasn’t ready and went straight back to the doctor and this time when I thought I was ready, we slowly weaned off them and it worked.

For two years I have been off all medication and coping well. I have embraced that darkness I felt and can happily share my story. William is my word and the love I have for him was always there but was hidden by the storm clouds in my head. It didn’t flood in immediately but bit by bit as the clouds cleared, just like the sun does… it creeped through.

I know that Williams delays and medical issues are not my fault, that I did everything right when pregnant and that I loved him unconditionally from the moment I saw him on my scan and that even though I didn’t feel it, he did. He knew I loved him and still knows now.

There are days, even now in which I feel a darkness but speaking to people and being open about it really helps. This blog saved me as did all of you who read it, whether its ever post or just one. Each of you help me overcome every hurdle, every obstacle just by allowing me a platform to rant and cry about how I feel. Sometimes about myself or sometimes about the system that fails us.

Thank you and if anyone needs to talk please get in touch, with me, with a friend, a doctor. Don’t keep it to yourself. Darkness isn’t as lonely if you have someone by your side.🥰

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Posted in Brief updates, Dads Journey

Co-Parenting

Today’s topic of conversation is co-parenting. I wanted to do some research into the types of co-parenting, purely to make sure William’s dad and I are doing it right and hopefully improve upon it if necessary or make sure we are at least heading in the right direction.

There are 3 types of coparenting.

High conflict co-parenting

High conflict parenting is exactly as it sounds, it’s difficult for some to put personal reasons aside and focus on what’s best for the child. This is often the style used in the aftermath of a separation. This style of parenting can be detrimental to the child and makes it almost impossible for both parents to have equal say in the way in which a child is raised. Usually in high conflict parenting relationships one parents tries to maintain control of the child and their Ex, often being unable to make a courteous, decent, or even ethical choice for their child.
I read an article recently about the signs of High conflict parents and it is usually because one or both parents are narcissists, but this article was very informative on spotting the traits of the high conflict parent.

  • The blame is always on the other person, they themselves can do no wrong and often portray themselves as the victim.
  • They lie, they often don’t think of any repercussions or simply don’t care.
  • They seem to enjoy the conflict, relishing in the attention it brings them. Their behaviour can be classed as gaslighting, using your natural emotions against you to cause a reaction. It often means its their way or no way.
  • They use your child against you, refusing or restricting access. This may also include speaking poorly of the other parent in front of the child.

Parallel co-parenting

The most common type of coparenting is Parallel Co-parenting, this is usually when two parents are unable to communicate with each other but have learned to tolerate one and other but lead two separate parenting strategies with little to no discussion. It is possible to transition from high conflict to parallel co-parenting but can take lots of work from both parties and may result in legal mediation or court ordered access rules restricting the need for the parents to communicate.

Cooperative and collaborative co-parenting

Finally, we have the category that William’s dad and I seem to fall into. Learning how to co-parent is difficult but I don’t think we really had a choice, because of Williams additional needs, we had to make sure we were on the ball with it and singing from the same hymn sheet so to speak. This is the pinnacle of co-parenting and what all parents that are separated such be aiming towards. It’s kind of weird how when we were married, we couldn’t communicate but now we do it easily and without thinking. I would even say we have a sort of friendship (we won’t be having movie nights and braiding each others hair though 🤣) Our conversations are mainly about William but we can also ask how one and other are. He even went out of the way to have William so that I could recover from my shoulder injury and the flu. Don’t get me wrong both David and I would probably agree that it wasn’t easy to begin with but just short of a year on we have it running like clockwork. 🕒

I think with the way our marriage crashed and burned that it would have been easier to slip into high conflict and then just coast through parallel co-parenting, but we persevered, and it’s paid off because it was the right thing to do.

I guess what I’m trying to say here is that despite the past and any hurt, that we both consistently put William first, as any parent should, and I am grateful that we are able to do that. I remember my post announcing our split and how I wrote that we would be co-parenting, and that Williams dad would be involved in all decisions etc, but I don’t think I believed it at the time. Maybe writing it was a self-fulfilling prophecy?
Needless to say, I believe and always have done that both parents should have an equal say, rights and access to a child they helped produce and I am very proud of both myself and David for putting everything aside and working together to ensure Williams best interests are upheld and I hope we can continue to do so no matter what the future holds.

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Posted in Emotions

Panic! at the play date

I have come to realise that I’m a bit of an introvert, it sounds silly as I come on here and share so much information but in real life I shy away from people, I avoid activities and places that I am uncomfortable with, and I want to keep myself away from people who may judge me as a mother or William as a child. I am now at the point in which I don’t know if what I am doing is to protect myself or him. I want to tell you about my irrational fear of playdates…

I went on a playdate once, I mean there has been more than one over the years considering we have one every week minimum but this one is the most memorable, it much have been well over 2 years ago and I must say it was one of the most horrendous moments of my life.

William was definitely under the age of two as it wasn’t until his two-year check-up that I started to accept his potential problems.

Soft play! What kid doesn’t love soft play? My kid; that’s who!

I went with two friends from work who had both had their children around 5 months after I had William, please bear in mind that these two women, were women I felt comfortable with and had spent a lot of time with over the years, but I was dreading it, I remember being stood at the bus stop feeling so sick that I almost cancelled. I had already started noticing the stark differences between my child and children of his age and being around them and trying to sugar coat and deny Williams delays in development was exhausting and the more I had to do it, the less I was convincing myself.

Their children were beautiful but that wasn’t what bothered me, what bothered me was that they were so agile on their feet, they climbed and played independently, they communicated not only with each other but with their moms too whereas William just clung to me crying. He was barely walking independently and struggled to communicate non-verbally let alone with words.

The date didn’t end with soft play, we went for lunch. Their children played and independently ate and seemed to thoroughly enjoy themselves. William refused to eat and remained silent.

I felt like a failure, what had I done so that my child wasn’t like theirs? Was I not loving him enough? Was it because I was working and wasn’t with him all the time?

I didn’t reach out for another play date.
Was that wrong of me? I truly don’t know. I don’t actively seek out play dates with anyone, but sometimes they just happen.

We have play dates once a week with the same child and they go really well but they are often in the comfort of our home, William has familiar surroundings and can easily access his safe place. We have had a few outside the home and some have been great and others not so much, but it all depends on how William handles the situation or environment. We went into our local park once and it is truly beautiful in there, I don’t think I appreciate it enough since its on my doorstep but on this day it was busy, it was a half term of some sort and William was struggling, he wouldn’t walk and I didn’t have the stroller since we are still waiting his referral and he kept laying on the floor to the point I was peeling him off it like day old gum. Teens laughed at him and I felt myself getting more upset, William continued to shutdown… It was not a good play date, but we continue to have them, maybe it’s because I understand William more now than I did back then, I just don’t know. I don’t know why these playdates don’t bring on anxiety and sickness, but others do. Maybe it’s the unknown 🤷‍♀️

I guess I need to put myself and William out there more, but I don’t know if it is what is best, William doesn’t engage with other children at nursery so am I being unrealistic in trying to get him to engage with other children on his days off, is it fair on him? But then am I just saying that because the memory of how bad of a mother I felt back then is impacting my decisions now?

How silly is it that something so simple as meeting other parents and kids can make me feel so anxious that I am physically sick? How do I get passed this? Do I even need to?

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Posted in EHCP Process

Moderating in time

Today was the day in which I should have had an update about Williams EHCP, I should have been able to figure out what the next steps are going to be for Williams education and find out if that slim chance of a special school allocation was within our grasp.

However today was not that day. No days are the days they should be and I an beginning to learn this… I need to prepare myself for these things as they happen all the time and yet continue to knock me for six. As parents we shouldn’t be continuously let down by those who are supposed to support our children and adhere to timescales laid out by themselves.

The EHCP has not gone to the moderators… Still! This is because the medical report needed and the Speech and language report have still not been received. These should have been submitted by 15th of February and its now 4th March 🙄😡

So now we are back in the waiting game… Next week or the one after. Who even knows?!

Posted in autism and covid19, EHCP Process

Lockdown 3.0

It’s a strange time for everyone at the moment, no one wanted another national lockdown, but it was inevitable, and I do believe it’s for the best. I thought that after the new year I could get a little bit of my life back and can start having one but that will have to wait.

The problem with being alone is it gives you time to think and over analyse things such as school!! All the applications are in, the EHCP is in process and now I can only sit and wait and that is the bit I can’t cope with. The decision on special schools is usually made by the end of January so I should hear something no later than the middle of February but I’m now worried that they may be running behind on it because of Covid and I don’t think I can take it; the wait is already driving me crazy. If I go for worst case scenario which is middle of February, then its 35 days to wait. 35 days of freaking out about if he is going to get a place he so desperately needs and if he doesn’t, it’s even further away until the middle of April for mainstream allocations. I want to be optimistic, his EHCP is 90 pages long, his issues are profound and complex, and all parties involved have agreed it would be the best place for him but what if it just doesn’t happen? I have a whole new scenario to stress about. For someone who has lists about lists its really difficult to be able to plan for events you have no control over.

That’s exactly how I feel kid…

On a positive note, I have finished my level 2 in autism understanding and am awaiting my tutor to confirm if she passes the second module. I do feel confident about it to be honest and really enjoyed doing it, once my pass certificate arrives, I think I may do more, I have already scoped out two further courses; level 2 in challenging behaviour and a level 2 in learning difficulties, I think they will both come in handy for when I pick up some volunteer work when William starts school.

William is doing really well in his development; his eye contact has improved drastically, and he is getting very good at object exchange to show me what he wants. He even takes his own pots into the kitchen and only throw them about 10% of the time 😂 I know it doesn’t seem like a lot but to me it is amazing. To me a few seconds of eye contact can bring tears to my eyes.


We did have a few bad nights recently as William had some bowel issues 💩, he ended up in my bed for over three hours crying and needing me to rub his tummy. I wish I could take his issues away and make him feel better when he’s in pain.

I’m so grateful that nursery is still open during this lockdown as I am not sure how I would be able to work and look after him as he needs constant supervision. My head tells me that I should have made the decision to keep him off to protect us from potential contact with Covid but the disruption of his routine would also be hard on him and he has had enough of that recently. If possible I want things to remain normal for him.

We have lots of messy play planned for lockdown which I’m really excited about but may regret deeply 😂 We tried out slime in the bathtub which was super fun messy but totally worth it to see Williams face, not so much the having to clean the tub part.

Next on the list is finger painting so wish my upholstery good luck 🍀

Posted in Appointments, EHCP Process, PCP & TAF Meetings

TAF Meeting… Part 4

So let me just take a moment to acknowledge how difficult things have been recently, William is sleeping less than usual and seems to be having more issues with his bowels than ever before… this means a grumpy, exhausted and sometimes hangry mummy at the best of times. Why did I chose before christmas to go on a diet. I’m missing out on soooooo many boxes of celebrations 😭

One of our many ‘stupid o’clock’ snuggles
One of us is wide awake and it’s not me!


As someone who is not afraid to state that I am a pessimist, very neurotic and an overthink you can imagine how I feel going into any meetings and today I was filled with the same amount of dread, not because they’re awful but because no matter how prepared I think I am it never feels enough, at least emotionally.
There we go… self pity over with. 🙃

The meeting was attended by one of the wonderful ladies who work in the special needs room at William’s nursery, the early years senco and myself… a smaller audience than last time but that isn’t always a bad thing.

Williams EHCP has been agreed to be assessed!!! 🎉🎉🎉 a huge relief that we havce gotten over the first hurdle and I don’t have to take it to appeal. It is now with the moderators and I am awaiting the educational psychologist to reach out and conduct their own assesments on William, after that has been done it will go back to the moderators who will band his assesment as either intensive, severe, high or support plan only and some time after that we will be sent the draft to approve. It feels like it has taken a long time to get to this point and even though we aren’t quite there yet it is a step in the right direction.

I love a good table so here is one showing Williams improvement over the last 6 months… Just look at all that green!!!! 🤭

Area of DevelopmentPrevious age rangeNew age range
Making Relationships0-11 Months8-20 Months
Self Confidence & Self Awareness0-11 Months8-20 Months
Managing Feelings & Behaviours0-11 Months8-20 Months
Listening & Attention0-11 Months8-20 Months
Understanding0-11 Months8-20 Months
Speech0-11 Months0-11 Months
Moving & Handling0-11 Months16-26 Months
Health & Self Care0-11 Months0-11 Months

The nursery has advised there has been a little bit of a regression recently and I had to explain about all the changes at home which they understood and will put a plan in place going forward which is amazing, they are brilliant with him and I would recommend them to anyone.

I didn’t want to send William to a mainstream school, I felt it was admitting that a mainstream school can accommodate his needs and I don’t believe they can however today a little bit of reality hit me… I had discussed with William’s dad about keeping him out of school until he gets a place within a special school, it would mean we would have to rely on each other for child care in order for us both to work but we said we would do it however when I mentioned this at the meeting, the senco told me he may not get a place this year, next year or the one after and because their allocations are needs based there is no guessing the outcome. I knew… deep down I did know that it was a possibility but hearing it outloud was hard, I cried (thank god my webcam wasn’t on 🎥) I was very vocal at admitting that I don’t think myself or William are ready for this next big step. It took me two years to send him to nursery!
However putting that aside, I have chosen three schools based on recommendations on their SEN facilities and Ofsted reports and when I am ready I will submit his application, its not due until 15th Jan so I may not be ready until Jan 14th but… I will do it because it is what is right. I think deciding to keep him out of school for a year was a big step but if there is no definitive end date then it is simply impractical and unfair on William. They have told me that they will continue to ensure William is thoroughly supported no matter the setting which based on the senco’s promises previous I 100% believe.
We have a meeting penciled in for March to discuss his transition from nursery to school as I ideally want to increase his days at nursery after easter so that it isn’t too much of a shock for him going to 5 full days.

Special school allocations are announced the end of January/February and mainstream are announced mid April so I will have time to prepare no matter the outcome but it is going to be a long couple of months.

I want to end on a laugh so let me tell you about William’s girlfriends at nursery…
William doesn’t really interact with other children however there is a girl in his class at nursery and she has has taken a liking to him and hugs him really tight every time she sees him to the point his key workers have to pry her off either so she doesn’t strangle him or after William gives them the ‘help me’ look.🤗
So girl 2 doesn’t like William but she does like the sofa he has claimed in the reading nook, William doesn’t want to share his sofa so what the ladies do is seat them at separate ends of it. The girl is fine and quite happy but not for long… William lays all over her until she gets upset and then he laughs! and my mom tells me off for calling him a psychopath! 😂

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 Appointments

Hello

Its a Monday and when I was office based it used to be my favourite day of the week but not anymore, today feel like the most Monday-ist Monday ever! In the words of that Geldof prick and school shooter Brenda Spencer… ‘I don’t like Mondays.’

Today me got to meet our new health visitor; Louise. we all know how much we rated Sarah so she does have a lot to live up to. Louise has been the health visitor for our area for 15 years which is a long time for a health visitor to remain in the profession.

She turned up in full PPE as you would expect in todays current climate, Mask, goggles, gloves and full length plastic apron. Brilliant first impression… the neighbours must think we either stink or are getting fumigated 🦨🤣

She introduced herself and immediately jumped into questions about William, I must say the sceptic in me immediately though she hadn’t read his notes but she was also referring to him and wanted a thorough picture for herself of his capabilities and behaviours.

She confirmed she will be attending next Mondays meeting about his EHCP just like Sarah used to despite not receiving the official invitation.

Before I could even ask her about the Nappy Service she told me she had looked into our request and there was no leeway with him being under four, again this impressed me that she had looked into things that we had hit brick walls with without having to be asked. This one was on my little things I had written down during the months I was unable to speak with Sarah.

She has decided to put us through to a sleep specialist to help us hopefully get William to sleep easier and keep him asleep, this will involve lots of assessments and advice before potentially leading to medication such as melatonin.
Melatonin will help most kids fall to sleep but not all… The problem is some parents believe it will help a child who is procrastinating going to bed, stop a child waking up early or having nightmares but that isn’t the case. Melatonin is usually a natural hormone that our brains release in order to help us fall to sleep. Melatonin supplements are available easily online but they are NOT regulated and may do more harm than good. If you are considering Melatonin please ensure you speak to a professional before buying something that you cant be 100% sure of what’s in it. There are concerns that because melatonin is a hormone that it may effect your child’s development when they hit puberty and it is something we will need to consider deeply if we reach that stage.

I asked her to refer us to Wheelchair services so we can get a specialised buggy but she wasn’t sure if she was able to do so. she said she would be in touch about it and… within 2 hours of her leaving our house she was on the phone advising us of who we need to speak to as only two organisations can make that referral, Occupational health and Physiotherapy but William doesn’t need any of these 😕 Its not that he can’t walk. Far from it. Its when he does walk he will drop to the floor in a floppy state no matter where he is including roads, its the fact he has no danger awareness and a buggy at times he goes floppy or has a meltdown would prevent him from getting hurt. I’ve lost count of the amount of time Dave has had to stop cars because or child is laid in the street. 🚗 we have spoken to our G.P surgery and have a telephone consultation booked next week for the doctor to decide if its appropriate for him to refer us 🙄

I’m not sure if we mentioned the questionnaires that are sent out prior to a child’s development check up but they have always been brutal to us. They focus on what children should be doing for their age group and as we are all aware William isn’t at his age group so it was a lot of negatives for us. These are called the Ages & stages questionnaires and unless I am mistaken are to identify children who may have developmental disabilities.
He will now be assessed based on the Nelson scale which focuses on the age he is at for each area rather than where he should be for his actual age. I think this will be much easier to help us understand the next steps in his development. We see little improvements and new achievements but we find that the standard ages and stages just doesn’t celebrate or include those and will continue to score zeros despite developing slowly at his own pace.

On the plus she has weighed and measured him and he is in the 25th percentile which is where he has been all along. This made me feel so much better about his eating habits as I do worry he may be underweight but apparently he is perfectly healthy… which is always good to hear.

I think because Sarah was all we had know for 4 years we held her on a pedestal and it was unfair to presume Louise would be inferior to her. She has already made a brilliant first impression but I guess I’m just skeptical due to the amount of agencies who have failed to uphold their promises but Louise seems really promising and honest and I guess that’s all we can ask for. She will only be with us until William starts school in a years time in which the school support will take over… if we get in but thats a whole other worry for another day.

As always, much love from The Buckley’s 😘 xxx

Posted in Emotions

It’s in the DNA

Males inherit the X chromosome from their mothers, the Y from their fathers.

Williams results from the genetics testing came today and its a bit of a mouthful but… there was a variation from the normal pattern wirh interstitial hemixygous copy number gain Xp22.33. The test states there is additional genetic material.

Chromosome 22 is the second smallest human chromosome (21 is the smallest) including more than 51 million DNA sectors (they’re in pairs) and represent between 1.5 and 2% of the total DNA in cells.

There is no defined link between this and autism but there are a few case studies referring to it and those with learning difficulties but not enough research has been carried out. Its is classed medically as having uncertain clinical significance.

If it has come back as nothing detected that would have been shit but manageable.

If something would have been detected on his Y chromosome I wouldn’t have blamed Dave but I am sat here now blaming myself. After all the X chromosome came from me.

Have I done this to him? To us? The paediatrician will be booking in a consultation to discuss the results in more detail and establish if further investigations are needed but now I’m terrified of what they will say… will further investigation point the finger at me even more?

I just feel like I’m back at the beginning of our journey, like all the progress we’ve made in our acceptance and grieving over a child we thought we would have hasn’t mattered and I’m back to looking at him and crying because this could all be down to me.