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.
I think I have been pretty vocal about how all appointments and referral seem to go round for us but I held out hope (in vain) for our most recent one, to the nappy service 🚼
Let me put a little context to this. William is 3 years old but developmentally under a year. Due to his physical age he is the highest available size of nappies. He is not currently able to be potty trained as he isn’t aware of when he needs to go toilet or if he is he is unable to communicate this as of yet.
William also suffers from a lazy bowel and it doesn’t always function and it should so mild laxatives are often needed to relieve him of discomfort as he can go over a week before naturally being able to pass a stool. As you can imagine the build up of waiting to go natural or the explosion of laxatives puts any nappy to the test but imagine this happening when there isn’t any that will fit him 🤢
William also displays sensory seeking behaviors and unfortunately this involves a fascination with his own faeces. The will result in him smearing the contents of his nappy over himself and his surroundings and on occasion he has put it in his mouth.
On a night we have had to put him in a onesie to stop him taking his clothes off and removing his nappy. Unfortunately for us the little Houdini has now learnt to remove a onesie as you can see below… thankfully he was busted in time and put back into his clothing jail.
We were worried as he gets bigger what will do and we were told that there is a nappy service in our area which provides children with special needs nappies in bigger sizes which is amazing. However nothing is ever that simple.
Let me start from the beginning…
Our GP sent a referral to the community nursing team
The community nursing team rejected this as he is under 4
NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
Our GP sent a referral to paediatric medicine
The sent it back to the GP with advice to refer to community nurses or the learning disability team
NO ONE NOTIFIED US AND OUR GP CLOSED THE REFERRAL
I chase the paediatric medicine team who told us what they had done
I call the GP and they tell me to call the community nursing team
I call them and they only know about the original referral and won’t accept another one as he is still under 4
I call the GP and have to tell them exactly what the paediatric medicine team have told me
SUDDENLY NOW I HAVE TOLD THEM WHAT HAS BEEN SAID THEY CAN SEE IT ON THEIR SYSTEM
They can not help as the person who deals with referral is off (I don’t think they’ve ever been in the office when I have called) but a manager of the surgery will call me back
Kerry calls me and has no idea why she is calling me. She thinks it’s regarding his autism assessment.
I HAVE TO REPEAT THE FULL CYCLE AGAIN WHILST SHE REPEATEDLY TELLS ME SHE DOESN’T KNOW WHATS HAPPENED
She is going to call our health visitor and William’s own paediatrician for help and call me back
She calls back, she has left word for the health visitor but doesn’t know if she can help. She has called CAMHS (children and adult mental health services) and they can not help. She has called learning disabilities team and they can not help and she doesn’t know what to do.
WELL KAREN (SHE IS NOW A KAREN, I HAVE DECIDED) NEITHER DO I AND IT’S NOT MY JOB TO KNOW!
She will send me some links to places that can help.
DO YOU KNOW WHAT SHE SENT ME… A LINK TO A CHARITY SHOP AND A SITE TO SUPPORT ADULTS WITH AUTISM. SO FUCKING HELPFUL!
I found it hard not to cry or be angry whilst on the phone with Kerry/Karen and I’m sure she could hear the break in my voice when I asked her ‘what are we supposed to do now?’
And that is the question, what do we do now?
We can’t be the first parents who have come across this, we can’t be the first to be in this situation. What happens when you fall into the gap? Do we just stay there for 8 months and have a bare bottomed child or tie a carrier bag to his waist?
If I failed to change and clean his bum for him when he was physically under a year old then I would have been classed as neglectful but what about now? He isnt physically under year but developmentally he is still in the same place. Am I being neglectful? Or are the services in place being neglectful by allowing this?
People often struggle to differentiate between a child with autism and a child who is being naughty.
As a parent who suffers with anxiety it is very difficult to go to certain places and deal with other people who don’t know William like we do.
Something as simple as a journey on a bus can set me into a tailspin, a small journey can lead to an argument due to the fact other passengers look at William as see what they deem as an ablebodied 3 year old in stroller taking up a space they feel someone else needs more. Not all disabilities are visible and what give you the right to assume!
A trip to a supermarket can lead to a full meltdown due to the hustle and bustle of different people, a different environment, bright lights and loud noises. One the rare occasions he will walk, he will often end up laid on floor and go floppy because he can’t handle the stimulation and lack of familiar surroundings and comfort. This is not a toddler having a tantrum because he can’t get sweets or doesn’t want to walk, its because he is in pain.
When we go to a restaurant, cafe or bar he will beeline for any food he can see, we will stop him before he takes it but it can lead to awkward conversations, dirty looks and whispered remarks. This isn’t because he isn’t fed at home or because he is rude. This is because food is such a high motivator for him and that the fact it doesn’t belong to him doesn’t even register.
I shouldn’t have to apologise for my son for being himself but I find it becomes a more frequent occurrence as time goes on. I shouldn’t have to explain why he is the way he is, there should be a wider understanding of the autism spectrum leading to acceptance.
I truly believe that autism awareness and understanding should be educated in schools so that future generations don’t make the same mistakes and assumptions. There are no definitive figures of those with autism as no record or register is kept but based on recent surveys 1 out of 100 has autism.
Think of the children in your child’s year at school, think of the children who you went to school with. I wish I had been more aware, more educated and a better person.
I want that for the future, for children like William and for parents like us who often feel we should apologise on behalf of our son when maybe, just maybe they should be apologising to us for their small mindedness.
We take the same notebook to every single meeting, it wasn’t an expensive book; in fact I think it was a freebie from a company my work engages with on twitter but this random book has become a symbol for us, a record and a reference guide. It has been to every meeting without fail and contains scribble and tears (maybe snot too🤮) We need to start looking for a replacement as its almost time to retire this one, and by retire I mean put into storage in case we need it for reference in the future. I’ve bought loads of new notebooks but non of them are quite right. I know it may sound silly as it’s just a pretty ordinary notebook but it symbolizes our journey.
I’m not sure if everyone’s experience with PCP meetings are like ours but it wasn’t what we expected. We were sent a copy of William’s support plan yesterday to prepare us for today and were asked to look through it and focus specifically on his areas of need. Both Dave and myself sat down and picked apart this plan and what other professionals had written either agreeing, amending or adding & removing and making notes in our trusty blue notebook ready to question parts we didn’t understand or needed clarification. The support plan is twenty-six pages long and that is with a small font!
The call was at 3pm and I had volunteered to work until shortly before so that I didn’t sit dwelling on it all day, luckily Dave wasn’t back at work until this evening so he was able to look after William. Meetings are very different in the current climate so instead of having to travel to the nursery we had to, usually in silence with a few passive aggressive comments we had to gather round my desk and tune in to a Microsoft teams meeting (I spend my entire working day on teams 🙄) We expected a woman from our school of choice to attend the meeting but she was busy which is understandable but disappointing. More concerning is that our nursery representative couldn’t figure out how to work Teams. We expected to go through the points raised on the support plan and be able to put our input in whilst on the call but this was not the case, Our SENCO spoke through was each section of the plan and told us that until I next meeting we were to input our thought on Williams strengths and needs focusing on his worst days because that would be when he needs the most support. There were parts that weren’t relevant to William which had confused us last night and should have been deleted but we got some clarification which was good.
I must say the SENCO Lisa is fab, she answered numerous neurotic emails from me during lockdown and told me and the nursery (who was on Lisa’s mobile on speaking in the background) what needed to be written or included.
I think the main focus of this meeting was to discuss what will happen in the run up, during and after our next meeting. This disappointed Dave as I think he expected more from the meeting in general and didn’t take as much from it as I did.
SMART Targets have been set for William and what they are aiming for him to achieve within the next four years.
To be able to use objects, images and timetables as a point of reference in order to follow a routine. (They believe this one should be achievable by the end of the year depending on how much William regresses when he goes back to nursery)
To independently engage with a wider range of activities and toys.
Communicate my wants and needs to familiar people.
Explore a range of unfamiliar environments and activities independentlyin various ways.
Its great to see they have targets and what was very impressive is the steps they already had in place to ensure he is on his way to these, no matter how slowly.
I’m not sure if we have mention previously but William has Global Developmental Delay (GDD) and currently William is classed as being in the 0 – 11 months age bracket. He has developed in almost every area barring one into the 8 – 20 months bracket. The one that he is struggling with revolves around language and communication, hopefully he will progress when he goes back to nursery so he will officially be in the higher bracket. I said to Debs tonight that’s its really daft as it is just label to put on him but it feels really important for us to have it, to know where he is on the scale and that he has moved from one to the other.
The next step is for us to add to this pan and submit it before the end of next month in time for our next meeting which is 21st September (Happy Birthday Me 🎈) This next meeting will be to finalise the support plan to submit for EHCP assessment which will take 20 weeks from submittal to be confirmed. We should get a draft back after 16 weeks to approve or edit.
Our intention to send William to a specialised school has been documented and admissions are fully aware that that is our intention. This doesn’t guarantee him a space but at least he is on their radar which can only be a good thing ready for the application process later in the year.
The world is slowly starting to settle into a new normal which sadly means the amount of posts we have shared is slowly declining.
Jobs have resumed but sadly nursery hasn’t (at least not in a William friendly way) which means we don’t have as much time as we did over the previous months were it often felt like we were spamming you with content. #sorryNOTsorry 😂
We will still be aiming to write a minimum of one post a week however please remember that we both have jobs and a very demanding toddler 🧒🏼
This year has taught us so many things already that should have been obvious.
Hug your family a little tighter when you can. You never know when you will be able to do it again, if ever. It will have been 113 since we last saw Big nanna.
Appreciate your friends, who checked in on you to make sure you were ok. I tried to check in on almost everyone, especially those I knew lived alone or had health concerns. I was shocked at how few people checked in on us and it hurt a little.
We are not invincible! The ‘it wont get me’ attitude was astounding during the last 3 months and for the most part they were right. It wouldn’t get them until it did! It felt like this huge thing that was happening to other people but then it hits closer to home and it really shocks you, parents, grandparents, celebrities… it had no boundaries and we are super grateful that our loved ones who were affected have since made a full recovery.
Appreciate your neighbours and get to know them, I can honestly say that we have never made a massive effort wherever we have lived to get to know our neighbours but during lockdown we found that they were our biggest support and comfort whilst having a cheeky brew (or beer🍻) over the garden fences and wished we had done so sooner.
The family that works in your corner shop, the cashier at ASDA, transport workers, support workers and many more have kept this country cared for and stocked with essentials (toilet roll 🧻) during a time when others were scared to leave their homes. Unsung heros of 2020 🦸♂️🦸♀️
I went into lockdown in panic mode, I honestly worried about my mental health and how I would cope with no professional support with William, no days spent at the office or visits with family. I cried myself to sleep about how alone I was. How each day with William felt like I was drowning and every time I got my head above water another wave would take me under. Don’t get me wrong we have had a few issues like chicken pox, ear infections and bowel problems to make matters more tense but we did it. We were strong and made the most of the time we had as a family.
Dave and I are usually like ships in the night; I work on his days off and vice versa, these past three months we have spent more time together than we have in about 5 years. We got to know each other again and did daft things like play on the playstation and go for little walks holding hands. I am so lucky to have found a man like him, blessed to have convinced him to ask me to marry him and forever thankful that he gave me William.
Williams nursery is closed until September, they have offered us a place at a different site until then but we don’t think it is the best option for William as he would just start adjusting to the new site only to move again, we have been trying to keep things as routined as possible for him at home but its not always possible, I have been back working from home for 2 weeks and during my first meeting he came upstairs with a chicken nugget (successfully avoided the dog) and tried to stuff it into my ear. 🤣
I think is the beginning of a new normal, a new way in which we do things. Was the old way better than this? I guess only time will tell.
FYI. We saw Big Nanna on Sunday. William hadn’t forgotten her like she had feared. He acted as if we had never been away. She cried, I cried, we all cried 😭
After reviewing Jessie Hewitsons book and BBC’s The A Word it got us thinking about how autism is depicted in movies and I couldn’t immediately think of a single movie I had seen in which depicted an autistic character. So after a quick google search (what did we do before google eh?) I came up with a list of movies we want to work through and review or in some cases pick apart 🤔
So our first choice was on all the lists of movies we found and it was the first to come to my head and Dave kindly agreed we could watch it (not that he has a choice, I don’t think he even knows how to use our smart remote 🤣)
Author Winston Groom, star Tom Hanks nor director Robert Zemeckis have ever commented on if Gump was intended to be portrayed as autistic but there are so many traits scattered throughout the movie that it would make it too much of a coincidence however the novel was written in the mid 80’s and autism at that time was not widely recognised or understood so I highly doubt that the character was written with autism in mind but realistically in the mid 80’s did anyone have autism in mind?
Don’t let anybody tell you they’re better than you Forrest… If god had have wanted us all to be the same he would have given us all braces on our legs
That journey to school is excruciating to watch, his little face as he walks down the bus. Kids can be awful. This is what terrifies me if we can’t get him into a special school. Kids are not easily accepting of any one different to them especially as they get to high school age.
Young Jenny:Are you stupid or something? Young Forrest :Mama says, “Stupid is as stupid does.” Their first meeting is so iconic but what really jumped out for us was that Jenny just accepts Forrest for the way he is. She asks the question and that is it. She wasn’t malicious about it and didn’t push the question. Will that be what it is like for William? Will we have to warn every parent & child that William is special, that he has autism or that he is different? Or will he be able to handle it on his own?
Oh god the bullies 😭 I would personally climb into that TV screen and knock those little bastards off those bikes!! 🥊 Poor Forrest bleeding from his head but he ran those braces right off! My heart immediately thinks ‘yes, go on Forrest! you outrun the bastards’ but my parent brain is saying ‘his mother should be asking that Orthopaedic doctor for a refund. Those braces didn’t last long enough to straighten his back!’
One of the main stand out traits is that he is lacking of social understanding, he doesn’t understand the etiquette of social situations. He meets two presidents, he tells one of them he has to pee and when the second one jokes about seeing his bullet wound he thinks its a serious question and reveals his buttocks.
He is a very literal in everything he does as shown with his facial expression and rigid response during this iconic exchange.
Watching Forrest put his rifle together with such sheer determination is like watching William play with his Mega-blocks. The process is almost mechanical, they know how it came apart and they know how it goes together so could happily and easily repeat it numerous times.
That look of love and admiration in Forrest’s eyes whenever he see’s Jenny is magical although if William ever brought home a girl like Jenny then she would be buried under the patio à la Brookside.
Tom Hanks is hands down the only actor I feel could have played Forrest, nor because he is the actor that does play him but because he does it with such an innocence about him that I feel many men of Hanks age would struggle to pull off.
I know we are purely speculating but if Forrest does have autism it make perfect sense as to why he would do so well in the army, not that I would ever let William join but think about it…
A strict and immovable routine
Constant clear instruction
Every thing has a structure, your bed is made in a certain way. Your uniform has to be cleaned and worn in a specific way. Its ideal for those who relish a routine. Its no surprise Forrest made it to sergeant during his enlistment. In one scene he is seen to be wearing several medals.
Purple Heart – awarded to those wounded in battle.
The army good conduct medal – awarded after 1 year of faithful service during times of war (3 years if no current war)
National defence service medal – awarded for service during time of conflict.
Vietnam service medal – for service within that specific war.
Republic of Vietnam medal – awarded by the Vietnamese to foreign troops. FYI – it is engraved with a start date but no end date as they were made before the war was over.
Medal of honour – given to those who have performed distinguished acts of valour.
💕Bubba💕 He is such a brilliant friend, he immediately accepts Forrest for who he is, he helps him and genuinely cares for him. He plans to be friends forever. I hope William has a friend like Bubba when he’s older. Hell I wish I had a friend like that now. After the explosions in Vietnam Forrest tell himself that he needs to go back and save Bubba and despite stopping and saving his entire platoon he keeps going back oblivious to the danger because all he needed to do was get Bubba and he was locked on that mission so everything else didn’t matter. I know its not no where near the same but William has no sense of danger at all would walk through fire to get to his hearts desire… usually food related, highly likely a biscuit🍪
Another thing that stands out throughout the movie is how literal Forrest is and his lack of inner monologue.
Forrest shows many of the common traits of obsessive behaviour but the biggest stand out obsession is ping pong. He plays when no one will play with him. He sleeps with his paddle and ball. He didn’t want to change his paddle despite being offered a lot of money.
Some nights I have to pry my egg poacher out of Williams tiny death grip whilst he’s asleep.
He then becomes obsessive about running, he didn’t think about it and just kept going. Every dead end he reached he turned around and went in the other direction. In the film he was running after Jenny left and it could be that he was running away from the pain of her leaving but it seems that in my opinion he was running to fill the obsession gap that jenny had created. Filling the void so to speak. 3 years 2 months 14 days & 16 hours that is beyond obsessive! It’s not neurotypical behaviour.
I had never realised before but as Haley Joel Osment gets on the school bus and Forrest sits down he was keeping the promise he had just made to his son. He told him he would be waiting right there when he got back and that is exactly what he is doing. He is sitting there until the bus comes back. 😢