After sharing part one of my life story, it's time to dive into part two. In this chapter of my life, I became a mother and faced a whole new set of challenges. My daughter was born and from early on, I knew that she was different. As a neurodivergent mum, I was well aware of the signs and symptoms that indicated my daughter may also be neurodivergent. We took her for her first assessment, which confirmed that she did, in fact, have her own unique set of needs and struggles. As she approached school age, I worried about how she would cope with the demands and expectations of a traditional educational system.

Her first day of school was a milestone that filled me with both excitement and dread. As a neurodivergent mother trying to navigate the world with a neurodivergent child, I faced challenges and obstacles that many parents simply don't understand. In this blog post, I'll share some of my experiences and insights in the hope that it might help other parents in similar situations. From the difficulties in finding appropriate support and resources to the ups and downs of daily life, this is a raw and honest account of the struggles and triumphs that come with raising a neurodivergent child as a neurodivergent mum.

Enrolment

Where can I begin, then to litterly express what a complete Sh*t show this was. As parents we think our kids are in the best hands when they begin a new school and as SEN Parents we do all we can to get them the early help they need. This was no different but all I can say is the whole experience has done more harm the good.

Lil miss had done so well at the kindergarten that we had absolutely no concerns when it came to enrolling her for big school. Myself and the Kindergarten had made a massive folder for the school to address lil miss's needs and enough paperwork so that when she started she would have a EHCP in place straight away; The head of SENCO herself even attended the Kindergarten.

With so much in place and constant communication, you would assume that everything would be okay right? Well how wrong was I. The decision to put her into mainstream education has been a massive regret of mine and a constant feeling of guilt. I’m always reassured that it wasn’t me that done anything wrong, but how can a parent believe that to be true when you put your trust into the school and teaching individuals? I shouldn’t hold this deep emotional pain, but they damaged my baby and that will always be a dagger in my chest.

Over Load

Ironically, the day Lil miss began her first day of reception year was also the day of her first initial appointment to see a paediatrician Autism assessment with the NHS. Quite a overwhelming day too, am I right?

The day was as any other. Lil miss was jumping across the sofa doing her usual living room acrobatics, completely hyperactive and bouncing off the walls. Breakfast was more all over her face then In her system and as per she had no clue that she had such a mucky face. I must admit I do love the fact she is so unaware that her face is covered in her favourite foods, how amazing would that be? Not to have a care in the world because you dont have the sensory capability to be aware of it. Me on the other hand posses the dreaded sensory mode where even the slightest bit of liquid on my face sets me off… I have absolutly no idea how i can have a full face of makeup, but then again i do remove all entirely as soon as i can laughs insecurely.

The nightmare began with lil miss refusing to put any clothes on so we had a battle for about 2 hours just to get one item of clothing on. Lil miss has always had bad sensory overload with clothing, we tried deciphering if it was because they are tight, loose, itchy, hard, smell weird the lot and you know what the conclusion is? All of the dam above. Fabric Materials physically make her skin hurt and i know what your saying, some kids will try anything but scientifically this is different. Lil miss develops rashes, welts, red marks, the lot and this is almost instantly with any fabric. Some people out in the world still don’t understand that some kids/people are more sensitive to there touch sensation, its all to do with the nerves and sensors under your skin so its not exactly like there isn’t any actual proof but ill write another blog about that another day.

The appointment soon arrived so I ended up carrying lil miss in a fireman’s carry whilst she was having a mini meltdown, if I didn't I don't think we would ever of got there to be honest. The day had already taken effect on lil miss and we wasn’t even started yet, we had already had 3 meltdowns and now she was having and ADHD hyperactive mania completely bouncing off the walls.

The Appointment

Sitting in the waiting room lil Miss is becoming even more restless to the point she is banging her head on the wall, ive managed to sit cross legged and restrain her from harming herself further using compression to calm her down.. or as i say ‘the mega bear hug’. My anxiety is growing worse by the minute and the receptions would not stop staring giving a disgusted look. As SEN parents you learn to keep your mouth shut way to much when people give you the look of disgust and this being a professional setting that we had waited years for, i really could not afford to let my Mama bear go out in rage.

After what felt like an hour we was eventually called in to the paediatrician. Lil miss began crawling under chairs, throwing things.. just the typical for an overwhelmed Neurodiverse child. Now, if anyone says it isn’t then they are lying *laughs*.

The Paediatrician seemed a little out of place whilst asking us lil miss’s history etc and she most definitely felt uncomfortable, I forget how many times she must of said “is this normal for her?”… like come on! Do you really think we would be here if it wasn’t? Jeez.

The appointment lasted about an hour and lil miss didn’t stay seated once. At some points she showed her frustration with belting Me and her Dad (non biological dad) so I can certainly say there was not an ounce of masking. The paediatrician said to us she is definitely Autistic and that she would put through for a referral for the assessments, i asked her about 5x if she was sure for clarity and she confirmed every time handing us some leaflets on Autism and Sensory processing.

This was the 2nd time that a professional had finally acknowledge what was clear to everyone and I ended up bursting into tears. I was so happy, I had spent 4 years fighting to get her seen and it felt like all those times people looked down on me and judged my parenting didn’t matter anymore; Although, what we know now is this simple moment of happiness would be completely squashed by the NHS in the future to come.

Day 1

I was full of massive amounts of serotonin because of that appointment making me feel more ready then ever to help lil miss experience a great first day at big school. When we arrived lil miss became extremely anxious and a meltdown was brewing so much that she was clinging to me for dear life. The teacher had to peel her off of me and I was hurried away like as if everything would be fine without me there. That serotonin boost quickly turned in to full blown anxiety and i know something was not right.

When it came to picking her up she came out that door a shell of herself. When I say a shell of herself I mean she was completely Gormley, I greeted her with such enthusiasm that even a slight response should of happened but it didn’t. I gave her the biggest hug and even then there was no emotion.

We carried on walking through the playground and I noticed lil miss was wearing a pair of plimpsoles, I questioned her about this and apparently the teacher had told her she was not allowed to wear the shoes she had on.

UGHhh.. the problems begin *facepalm* .. I must clarify that I had already told and discussed with the school lil miss's sensory needs and the problems she experiances with shoes. The only shoes she felt comfortable in was crocs so we made sure that we got her ‘work place Crocs’ which litterly have a steel toe cap and are reinforced materials to make them safe but with the same feel as crocs. The school told me repeatedly that these would be fine given the sensory need bur obviously there had been some miscommunication.

I huff under My breath but decide not to talk to the teacher untill the next morning so I put lil miss crocs back on and we headed out of the school premises. We got about 15ft from the school gate and that’s when it happened.. The meltdown of ALL MELTDOWNS.

MEGA Meltdown

This Meltdown was the worst ive ever seen, she was kicking, screaming, hitting, biting and even running off. This situation was so dam dangerous my anxiety and stress levels where beyond maximum, lil miss has no safety awareness so this made it 10x of a crisis situation. It took us 3 hours to walk her home that day with the journey only being a 10 minute walk.

At one point she had ran off and hid behind a bush it took us almost 15minutes to find her, little did i know at that point but these meltdowns and running off would be the norm for the next 2 years. Absolute F*cking hell.

This happened every single day of the week causing me to realise something was most definitely up. The following week I thought F*ck it i need to go see the SENCO and figure out what the hell is going on and to also ask about the continuous problem with her shoes. On the Monday i had an appointment booked to go discuss my concerns and honestly wasn’t expecting any problems, if anything i thought we were going to get more support.

F*cking hell… how wrong i was.

The SENCO

This was the first time officially meeting the SENCO in person, prior it had been emails and phone calls and i must admit on first appearances this lady was giving off a very enthusiastic bubbly vibe but I would soon learn this is just some act.

SENCO - “What seems to be the problem miss McKay?”

ME - “well i’m here to discuss a few problems we have been experiencing with lil miss, everyday after school and beforehand she has been having intense meltdowns that are becoming extremely dangerous. Id also like to ask why her shoes are being changed to ones the school are suppling as well as i’ve been told she doesn’t have a one to one yet?”

SENCO - “Oh im sorry to hear that (in the most belittling voice ever), shes not currently on our SEN register its very common for children to be experiencing anxiety when starting school”

ME - “Pardon? what do you mean she’s not on SEN? What about EHCP? and i understand children have transition anxiety’s but this is totally different”

SENCO - “I dont have anything on file to say she is SEN? Or that a EHCP was needed? Does she have any diagnoses?”

ME - “Excuse me? … Myself and her Kindergarten have communicated with you throughout the 6 weeks holidays how can you say that any of this doesn’t exist? She is under assesment”

SENCO - “Oh.. i dont think so. Also she needs to be fully diagnosed to be awarded a EHCP”

* / CLAUSE - A child does not need a Diagnosis to be awarded a EHCP or on the SEN register this is misinformation / *

ME - “We sent you every bit of paperwork so that it would be ready for when she starts!? Are you telling me she has had no additional help since she started this school?”

SENCO - “I think the paperwork must have been lost. I’ve been in the classroom this week and she is completely fine I don’t believe she requires any help. I will keep an eye on her for the next 6 months to see if i need to change my mind.”

I was completely gobsmacked. How could this lady tell me that everything myself and the Kindergarten had done was non existent as well as give me blatant misinformation!? This was complete B*LLOCKS! I swear it took me every ounce of strength to not kick off and remain civil.. I was Livid!

For the next month and for see able future we struggled daily helping her into school and this would become the Norm.

Broken Ankle

During October of 2021 (the same year) and yet again after telling various teachers NOT to put lil miss in different shoes i had a phone call from the office telling me that she had fell and hurt her ankle.

- Now let me tell you first off, lil miss has hypermobility and her ankles take most of the brunt with bendiness. The school were made aware COUNTLESS times that she has to wear either full support military style boots that cover the ankle & foot or shoes without anything at all around the back of the foot IE. Crocs. -

When i arrived yet again I had to tell them to stop putting her into inappropriate footwear, and because they keep doing so without my knowledge they had caused her physical harm. Guess what was on her opposite foot,… yep. A bloody PLIMSOLE.

My nerves are completely ticked at this point but I rush lil miss to the hospital and after 6hours we have the confirmation that she has indeed broken her ankle.

The school wanted an update so I called the office and let them know I would be keeping her off for the next 3 weeks because in my eyes if I cant trust you when she is able to walk how can i trust you when she’s in a cast? They didn’t like that, but at this point I really couldn’t give a dam.

For the next couple of months it was the same situation day in day out, the same meltdowns and complete stress having her behaviour blamed on her ‘home environment’ rather then the school take accountability that she had unmet needs.

Oh and you never guess what?….

Lil Miss broke the same ankle again at school in January 2022. I don’t know how many times I had to tell them that she was a late walker so is not very stable and needs constant eyes on her (we now know its because of Global development delay). As well as stop Bloody putting her in shoes that are inappropriate for hypermobility. Jeez its not rocket science is it?

I know what most are thinking why was I continuing to allow it to happen? well at this point is when I really started fighting back the system. Before hand I was so anxious and worried that if i kicked off then it would cause problems for lil Miss and i really just wanted to do the best for her. I was stuck into believing that the system cant be challenged, that I myself was like a little kid in front of these teachers. It was heart wreaking that i myself still didn’t have the confidence to stand up to professionals and the sad thing is this is a regular occurrence for parents with SEN kids.

Stay tuned for part 3 guys, because it doesn't stop here.