My Story As A SEND Parent

Let's start from the beginning. I am hoping by sharing my story other parents with special needs children can resonate, and if it means helping others or raising awareness then I feel passing on my story has been a success.

I fell pregnant with Leo in 2020, the year of covid, so right from the getgo met with uncertainty, no face to face support baby groups, gym classes were closed. I had to attend all the appointments on my own, all by working as a youth worker supporting young people around Bedfordshire. So from the getgo I already felt incredibly isolated. My 1hr walk allowance was taking out my dog Loki who was and still is my best friend. Leo was born healthy and very quickly in December 2020, I was in and out of the hospital within the same day. My maternity leave wasn't full of meeting other mums, Leo making new baby friends, it was full of horrible news and strict rules of more isolation.

I didn't get visitors, luckily my mum and dad were part of my covid bubble, but for the first few months they were too scared to hold my baby due to the risk of passing on infection. Loki my dog didn't warm to Leo straight away like you see on all those cute videos, it took weeks of getting Loki used to all the weird baby noises that Leo made, by keeping him on the lead and taking him out the room when he barked, or picking Leo up and leaving the room myself, over time Loki learnt that he could only stay in the same room with us if he was calm.

Covid continued and maternity was awful, I can say that now that I am not in it, some people loved the solitude and not being forced to mingle with people, at this new stage in my life I hated it and everyday was a struggle. Loki kept me sane and was my comfort through the storm. I found a new part-time job at the end of maternity, covid restrictions lifted over time, and I found a new community with Growing Together Northampton as a community worker, put on activities for the whole community and loved being around people again. Leo went to nursery, the transition was strange and all quite upsetting, as they were still worried about the risk of infection due to covid I had to hand him over at the door.

He would just cry and cry and cry for months, nursery said that covid babies took a lot longer to settle than other years, which may have been because they were so used to just seeing mum and didn't have the exposure of going into other environments. They suggested giving him an old tshirt that smelt of either me or his dad, and this seemed to help and act as his comfort. He was physically very fast, walking unaided at 9months, and incredibly strong, I didn't think much of it at the time, except he got told 'boys often move before girls' kind of comment. Over time he became settled and the nursery became less strict and we could go right inside and talk to staff more about his day, which always helps to make parents feel more at ease. 

Leo started nursery about 10months, and this is when he stopped day napping, at the time I just thought 'I am a terrible mother I cannot even comfort my own child to help him nap during the day', but when nursery said they couldn't get him to day nap either it made me feel like 'okay maybe it isn't just me'. Parents around me were still having their children's day nap, so I thought why is Leo different? He would often scream at night while he was sleeping, I would go and settle him but he wouldn't settle and I would just have to hold him.

Often tears would fall down my cheeks, Loki would comfort me in these moments and I would be left with this screaming baby not knowing how to comfort him and not knowing what to do and feeling completely useless. This went on for months, and there seemed to be no clear pattern, just started throughout the night. At nursery he was quite rough and very physical with the smaller babies, again 'he's just a boy' comment came up quite a lot. Groups started opening up, with the combination of working, Leo happy at nursery and finding friends at baby groups things felt like they were coming together, finally. Leo moved up the nursery group and as they were doing the milestones ticklist, this is when we started noticing he may be a little different, his speech regressed, he used to say words and then at 2yrs old this just stopped, he wouldn't respond to his name. He couldn't sit down to eat, focus on anything, he still put a lot in his mouth. Night Time he came alive, he broke his bed at 2yrs old, and used to flip his mattress, he would often peel the wallpaper off his walls.

Toileting needs became an issue and still very much something we are working with, so a lot of laundry. Beyond the challenges he has always been such a happy and very affectionate boy, incredibly active so keeps me on my toes and keeps me fit. He loves sensory, so mud, water, anything you can think of he enjoys playing with. Scared of the dark and sudden loud noises, so going into public toilets can be difficult and I am not a fan of firework season, Loki also hates firework season. I went to the doctors early in 2023 to ask to get Leo an audiologist, nursery suggested to get his hearing checked as he wasn't responding to his name, makes sense to tick things off the list as you go to rule things out.

On the first NHS waiting list we went. We seeked some private speech therapy, just to see if they could see anything we were missing and gave us some interventions we could use to help to improve Leo's focus, but she referred us to an occupational therapist, who then created a sensory diet for him whereby she suggested movements at least every 2hrs and he was diagnosed with sensory processing disorder, whether this be jumping on a trampoline, balancing, running, so I kitted out the house as best I could to help Leo with his sensory needs. Due to the NHS waiting lists we went private for audiology and it came up with there being no issues. The next summer when he was 3yrs old we thought let's give toilet training a go. I tried the technique where you stay in the house and put them on the toilet every 30minutes, now looking back big mistake, as I feel all his energy was probably just cooped up. At bedtime he would and still very much is a wild child, he would climb on his window sill and then jump off, I thought nothing of it at the time as I was used to him running around and jumping, I thought of it as him getting rid of last bits of energy before he fell asleep.

Then I heard a bigger bump. Leo doesn't cry very often. I rushed upstairs, the toilet incident covered the walls and floor, and his right thigh was huge, I tried to stand him up, his leg just flopped. I had to wash him and myself down. Rushed to the fridge to get some frozen peas to soothe him. This helped somewhat but the leg was like nothing I had ever seen. It was about 7/8pm at night so I decided to take a trip to ANE, luckily my parents could take me. We were in children's ANE for hours, then after his xray he came away with a 3rd degree broken right femur. I was in shock. We had to stay in the hospital for a few nights. I signed some forms and hoped that of course after this I would get more support, I have to.

He left hospital in a spica cast and he was in that for 6 weeks, we were given no wheelchair, and had to go back in specialised transport. Luckily my dad was able to add a board to the end of a wheelchair so Leo could lie down flat on it, otherwise he wouldn't have been able to go out for 6weeks. Leo handled it like an absolute champ, obviously now toilet training went out the window. That was a hard summer, by the end of the summer Leo could pull himself up and drag his legs behind him, like those possessed dolls you get in those scary films with legs that don't work. At the end of the 6 weeks he got the all clear and now looking at him you would not know he broke his leg, he has been incredible, so brave and so strong. 

Nursery supported us in getting our Education Healthcare Plan, and we were put onto another waiting list. At this point Leo's still non verbal, his focus very limited and incredibly active and a sensory seeker, incredibly loving. His screaming at night phased out, I learnt later on through a sleep course that these were probably night terrors, whereby you cannot comfort them and you have to wait for them to come round themselves, as opposed to a nightmare where you can comfort them and they can come round a lot quicker, this comforted me somewhat knowing this. We got rid of Leo's bed and he was just on the mattress on the floor for safety, my dad fitted a screen on the window sill so that he could no longer climb and jump. Had to get rid of the carpet to make it easier for cleaning due to ongoing toilet issues. We removed as much as we could from the room, and replaced it with a bar so that he could swing and get rid of his energy in a safer way within his bedroom. The highgate on his bedroom changed to a door with a window, to keep him safe when needed. 

The Education Healthcare Plan was accepted and after a bit of fighting we got him into the right school setting, a special unit within a mainstream school, they have a farm, lots of sensory facilities, and are just so amazing and so supportive and understanding of Leo's needs. We have had a few NHS speech therapy sessions who more or less repeated what was said with the private speech therapist earlier on, ideas to help improve his focus. We were able to go on a makaton course to give us another tool to communicate with Leo. At home we have lots of different communication aids as he stays non verbal. NHS audiology came through and found it very difficult to assess him because he couldn't focus. Moving forward Leo loves school, loves to keep me on my toes, bedtime is a struggle as he just cannot seem to switch off and doesn't fall asleep until very late, 10pm or earlier would be seen as a good night event after a whole day at school. He loves his bath and sensory play, loves climbing, loves cuddles and being thrown around. We changed his spring mattress to a memory foam mattress , as all the jumping meant that springs were sticking out. We are still waiting on a pediatrician to help with sleep and hopefully a diagnosis, which I am hoping will guide us towards more support. Toileting is still a struggle but we will continue working towards it. Although I love Leo to pieces it is hard, and has been hard, it can be very isolating which is why I want to create more special needs groups and events. 

I will continue to work to create spaces and groups to allow all children and families to thrive, feel safe, supported and not judged. As this story will never end, and I feel this has been a great form of therapy for me to write my story, I will continue to share my ups and downs as a special needs parent in the hope that it may help others in my shoes. If anything has resonated with you, or you have any questions or you just want to share your story please reach out. We are all this together, and I promise you even if you are sitting on the floor outside your child's room at crazy o'clock in the morning you are not alone.