Welcome to part one of my life story, where I faced a whole host of challenges as a neurodivergent individual. From a young age, I was aware of my own unique needs and struggles, and as I watched my daughter grow up, I began to notice the same patterns in her. Despite my perseverance in seeking professional help and advocating for my daughter, it was often an uphill battle and I was met with resistance and scepticism from those who were supposed to be helping us.
It took a long and arduous journey to finally get the autism diagnosis that we had been seeking, and every step of the way was a constant fight to be seen and heard. In this blog post, I'll take you through my personal rollercoaster journey of recognizing my daughter's differences, the long road to diagnosis and the difficulties of dealing with professionals who were dismissive of her needs. It is my hope that by sharing my story, I can give insight into the struggles that many neurodivergent individuals face, as well as offer guidance and support for others walking a similar path.
Even though she was different then the majority of children it never hindered my deep love and admiration for my lil girl and it never would. I use the term 'different' just so that my words are understood more because of this stupid society standard we have. To me... she is a super hero and all neurodiverse people are the next step in human revolutionary genetics. Simply put.. this is evolution.
I first started figuring out she was different from the early age of 1, I just had this over powering mum senses. I was like the spiderman of neurodiversity and those spidey senses tingled something chronic.
Lil miss would never nap... I mean NEVER. From the ages of newborn to 1 and a half she would only sleep for 30 minutes and then be awake for 8hrs, this would repeat itself untill when she hit 2 it became 1hr asleep 12hrs awake. From 3 years old she would sleep 5hrs and be awake for 36hrs at a time..
Looking back now I have absolutely no clue as to how I survived.. HECK! How the F*ck did I manage at all as a single parent let alone a single parent that was extremely sleep deprived! *eek*.
It wasn't just sleep that was an issue, if someone tried to communicate with her she would scream and I'm not talking a little bit I mean a full blown meltdown; This didn't get less intense until she was nearly 4 years old.
Communication was non existent, in the early years it was very much grunts, babble, tugging at clothes and further meltdowns. Some how as parents we learn there language and I must admit it did get much easier after she was 4 but untill then and even now sometimes we are in the land of lil miss.
Walking.. ah. Walking. *sigh*. This caused so many problems later on down the line and will forever continue to play problems, Don't worry I'll get to that part *winks*.
Lil miss started 'walking' at 1 and half years old, now I say 'walking' because according to some professionals that's what it was *face palm*. Let me explain.. lil miss was not able to independently walk without an aid untill she was 4years old, when I say aid I mean holding onto someone or somthing to keep her balance, walk a couple of steps without tumbling and a major one .. walk without walking into things, people or walls.
So you get the jist? She was different.
• Speech
• Co ordination
• walking
• Sleep
• Social anxiety
Oh … and then there's these -
• Seperation anxiety - I wasn't apart from her for longer then 10mins untill she was 3.. I couldn't even Sh*t without her on my lap! I kid you not!
• Picky eating - she would eat the same thing breakfast, lunch and dinner for 4months at a time.
• Repetive playing - F*ck me! The amount of times I would be ordered to 'Ba DA' Which in lil miss's language was 'Oi mate, sit the F*ck down and do exactly as I say or else' was ridiculous.. she would set up her pretend kitchen for 4hrs at a time. That was the game.. just that. Nothing else. Just lining up plastic fruit in colour order.. How am I sane?
• Incontinence - Ah this still isn't sorted even now.. but you've got to laugh aye?
So your getting it right? I had a massive list of 'differences' that any professional should of jumped apon to add to there portfolio of ism's right? WRONG.
OH how F*cking wrong I was.
The Professionals
At the age of the delightful terrible 3s I was convinced by a small majority that she was just 'sensitive' and that she would grow out of it and that putting her into a nursery would be the best thing since sliced bread to cut out all the problems we were experiencing.
Being the deflated bag of mess I was I gave it a shot and Jesus, what hell that was. I spent every single day in that nursery with her for over a year with her constantly screaming and freaking out. I was crying out for help and no body was listening, I was just deemed as 'molly coddling' or that she was just sensitive. Like for crying out loud ... isn't it obvious? She is Autistic.
It got to the point I became flustered and asked the manager of the nursery to contact someone for a referral and you know what I got? The same response as every other F*cker. "She's not Autistic she is just clingy, it's an age thing. She is fine". Now when I tell you that young first time mothers are ignored, I full heartedly mean it. That's not to say that other parents don't get swept under the carpet, but F*ck me it's worse.
The Meltdowns
Honestly it got to the point I felt so F*cking deflated, I felt like I was mad and that I was making things up in my head. Not long after this shutdown I went into town by myself to grab some much needed bits and bobs. It was the dead of winter, there's me armed with a buggy full bags full on the handles and lil miss wrapped up to the point she was a mini Michelin kid. But then it started. The meltdown of all meltdowns, complete sensory overload.
The screaming, the flailing, the refusal to keep all layers on her to keep her warm, the shoes flying on all directions. At this point I am so beat, I'm exhausted and my own sensory overload is now taking over.
This ordeal lasted for 40mins in the centre of town, I had people staring, tsking and making comments because they really think that helps don't they? Tears are streaming down my face as I'm trying to comfort her and I've got 2 shop security guards behind me on there radios as if I'm murdering my child. It was 30mins before 2 lovely women stopped to help me calm her, there's me blubbering to complete strangers repeating "it's a meltdown, she's autistic". One of the women said "don't worry love, mine are too. I understand".. that simple reasurance felt like a guardian angel, Just that simple kindness from a stranger.
By the time it was 40mins she had calmed down to the point I could push the buggy without it toppling over. I thought sweet, I'll give my mum a call to pick us up. Sh*t....
No answer……F*ck.
I muster any strength I had and grab the first bus going Home, by then she was calm thankfully. But then it started again..
5 minutes into the journey the screaming begins and we are in full blown meltdown again. This time I have the whole bus looking at us like I was a mum that didn't have a clue with what she was doing. An older woman made a comment about giving lil miss a back hand and my god, I lost it.
I can't recall the things I said but it was nothing of a polite nature and as you know coming from a past such as ours, violence in that sort of nature is a major trigger and this woman got the full brunt of it.
I got off the bus at the next stop apologising to the driver and cried the whole way home. I dont think I left the house for about 5 weeks after that.
You know what's disgusting right? Well the same thing that happened to me also happens to other people DAILY. How disgusting is that in this day and age? It's always the same comments too..
"That child's spoilt"
"My child wouldn't dare do that"
"That child has no disapline"
"They don't look disabled?"
If I had a Pound for every time a tw*t like that made a comment id be a billionaire by now. There is no need for complete ignorance, what ever happened to smile polietly if you don't understand a situation? Jeez..
The Wobbly tot
When Covid took over anything medical related was halted, even things such as seeing the health vistor and lil miss was no acception; By the time appointments started being made we had already missed her 2 year & 3 year review due to Covid.
Thankfully someone picked up on it and a lady from family wellbeing who was also a health visitor took on our catchment area.
I gave the forms to the nursery as the review was going to be taking place there instead of at home due to Covid restrictions. I start mentally preparing myself knowing im going to be told I'm a complete looney bin whilst I'm struggling with a frantic lil miss on my knee. That's when the lady said something unexpected.
This lady went on to tell me that she was behind on both her 2yr and 3yr review, (mainly her gross motorskills) she then told me that there's a possibility lil miss has a Global development delay aswell as she suspects she may have Autism.
HOORAH! Someone is finally believing me, I'm not going insane after all! Hearing this validation from then on I really did set my hopes up too high because as I will explain later Sh*t really did hit the fan with any professional after her. At the time I was ecstatic I finally thought lil miss was being heard, so you'd expect a referal right? WRONG.
The lady herself wanted to make the referal straight away but the nursery and a new health vistor who joined the catchment area made it impossible for her to do so. The only thing she could do was instruct we all have a TAF meeting (team around the family meeting) so that everyone was doing as they were supposed to in regards to helping lil miss.
At the first TAF meeting she was just over 3 and a half years old and my God was it crap. There's me sitting on my jack Jones on a zoom call whilst there's the nursery manager, the family wellbeing lady, the new health visitor, some mediator woman and another woman I've no idea who she was from all whilst being belittled and made out to be some young mum joke. From that shambles of a meeting I ended up on a 12 week course with family wellbeing so they could assess lil miss in her home environment and about 5 different parenting courses. Got to love those parenting courses... NOT.
Honestly those courses make you feel like people think your the dumbest person alive. They were extremely degrading to the point I had to stop one night just to have a reality check to remind myself that I'm a good parent. Why they feel the need to make SEN parents do those pathetic courses I do not Know. I understand its so that its one thing off there check list.. But come on! Do they really think we haven't tried every tactic, tip and technique out there in the world to help our kids? GET REAL MARGRET.
The waiting game
After spending up to a year doing every single course and Program they could throw at me they had finally run out of excuses and lil miss was FINALLY put on the referal waiting list for a Autism assessment with the NHS. Relief? I guess at the time you can say that.. but as my future blogs will tell you all of this was only the start of hell to come.
I begun hitting a higher yearly earnings range with work, so I took the plunge and removed lil miss from that nursery and put her in a private Kindergarten.
My WORD! What a difference that place made! They could tell straight away that lil miss was SEN and created tones of little workshops to help her with her communication skills, walking and general learning. I couldn't believe it, lil miss for the first time felt comfortable enough to leave my side, even to the point some days she was running in to her favourite lady and guess what? Not once did she have a meltdown attending that Kindergarten.
when they say you get what you pay for, I definitely believe in that narrative that's for sure.
A whole year went by with lil miss attending this Kindergarten she really blossomed, becoming such a happy child because of the help they gave her.
But little did I know Sh*t was going to go dramatically down hill once she hit school age and this became the reason why I'm speaking out today.
Posts
.png)
%20(2).png)
.png)
0 Comments