When Lizzy was diagnosed with epilepsy we were in a world of stress and grief as we came to terms with the fact that our perfectly healthy child was no longer perfectly healthy. Our world revolved around seizures, medications, lack of sleep and repeat. We were dealing with behaviours, tiredness and a child who was struggling to learn and we put it all down to seizures. We started coming out of the fog, the seizures kept on coming and it just became a “normal” part of our life.
I look back and see that we looked at Lizzy as a neuro typical kid with epilepsy and a few quirks and if we could get these seizures under control everything else would fall into place.
We lived like that for about four years and the seizures were still coming thick and fast and we were cycling through meds and nothing was working.
I started questioning Lizzy’s learning in about grade one, there was more to it then just her epilepsy and we got an education assessment which said “there were some processing issues but nothing major and it was mostly likely the medications causing it”. I remember thinking that I didn’t agree with the assessment but we just hoped she would improve. In the back of me head I knew the gap was going to get bigger as she got older and she would always go four steps forward and three steps back and slowly slowly improve.
Again a couple more years went past a lot more seizures and we still saw behaviours and exhaustion that we put down to seizures and meds. We went to Melbourne towards the end of this time and had her first ever neuro psych assessment. It showed she had amazing visual processing but processing deficiencies in most other areas and her literacy was in the 5th-15th percentile in all areas. I had a feeling this was the case and this assessment was the first one to identify that learning was a bigger problem then previously tested for.
We were sad that she was having to work so hard but we were also thankful her iq wasn’t being affected significantly .
We kept on going seizures, behaviour, exhaustion but now we had started to put things in place at school to try and improve her learning and we were seeing little improvements.
I had been talking to friends who had kids with sensory processing disorder (SPD) and I had started to realise that many of the behaviours that we were seeing eg food aversions, not liking loud noises, struggling in crowded places, were leaning towards the fact that Lizzy had SPD.
The day I won’t forget was the day we went for an Occupational Therapy (OT) assessment.
We had made an OT appointment so we could try and understand our girl and I came out gobsmacked. Yes Lizzy had SPD but the thing the OT realised within ten minutes of entering the room was that Lizzy had low muscle tone. I wasn’t expecting this but as soon as I walked out of the hospital everything started to click. The exhaustion, not coping on big outings and long walks she had never coped with them, the floppiness of her movements, even chewing food could be exhausting it all made sense.
I see that day as our turning point because that is the day that we realised that Lizzy wasn’t a neuro typical kid with epilepsy she was a kid with complex needs and if we could start addressing these complex needs we might reduce her triggers and improve her seizure control.
Now we had exhaustion of a whole different kind. Lizzy was still having seizures but we had added OT and Physio sessions to her life. I can tell you this is a hard balance, as you don’t want to trigger seizures but you also realise that if things improve you have the ability to improve her as a whole child.
We bought a stroller for her a month after we found out she had low muscle tone. The words that stuck with me from the Physio assessment that we had organised very quickly after the OT assessment were ” For us to walk around the block once was the equivalent of Lizzy walking around the block four times”. Wow, no wonder she was exhausted. The stroller meant we could go to the zoo and she would last a whole day or we could go to the shops and she could sit in it and hide if she wanted and not get tired from walking around. It was life changing our whole mind set started changing.
Physio also highlighted she had motor planning issues as well which was another “AHA” moment for us. We would ask her to do something like tidy up her room and she would just sit there not knowing where to start. I realised that so many things in life you need to have good motor planning.
No wonder our girl was having tantrums. The meds don’t help but it was the overwhelming sensory of the world plus brain drain of learning and the physicality of just walking, playing and chewing, that was tipping her over the edge.
Our girl is bloody amazing. I don’t know how she had made it that far with no interventions. She is as strong as nails no bloody wonder.
We have more recently had Lizzy diagnosed properly with a learning disorder and we also started psychologist appointments to help her work through the complex needs that she has and how to navigate psychologically in her world.
So back to that statement “In her own time and in her own way” the end of that statement should read with a lot of bloody hard work from her and us. “In her own time and her own way” is also important because we learnt to realise that our wins came from recognising her developmental level not her age level and so the pressure to succeed at the same level as her peers disappeared.
Lizzy is a whole child and we now view her this way she has epilepsy and complex needs that needed to be addressed. Her school is now aware of all her needs and so from a sensory, physical and learning perspective her IEP is designed to support her in all areas. I had to fight for this at her school for a year and a half to make it work but they now get her. It feels good knowing she is well supported at school.
Physically the improvements have been dramatic she will always have low muscle tone but her planning and strength have taken her into the 80th percentile in gross motor skills. The writing classes with OT and Physio have improved her writing to be legible and not as exhausting for her and she is allowed to use her computer when needed. We now have a wheelchair as the stroller was getting to small and it doesn’t often come out but we have it for those extra big days and she feels good using it as it helps her cope. And she can tell us simple things like “one thing at a time mum otherwise I get confused”.
Her sensory processing will always be with her and we have worked hard to understand her needs. We are reaping the benefits of knowing what we just don’t do as a family because it’s not fair on her or us and she is able to tell us her sensory needs now. I know this has come with maturity but I also know it’s because of the language we have used with her to learn to express her sensory needs.
Psychologically she is expressing her thoughts and feelings, her stress has decreased and most importantly she is feeling good about who she is. Her words a couple of months ago show how far we have come “Mum, it’s okay to be different, I am me” It makes all those Psych visits worthwhile and we will always fall back on Psych and not let things grow to big before we deal with them. She has a good friendship group at school and is such a caring empathetic kid who understands the other kids with needs at her school, plus she won’t suffer fools and will cut them off quickly so she makes good choices about who she is friends with.
A year ago she learnt to ride a bike without training wheels for the first time there were happy tears that day. She has just recently completed all her most frequent word lists at school which has taken a long time but she was so excited to complete them and so were we.
I know this was a big blog and I have had it tucked away for a little while. I wasn’t sure where to start and I’m not sure if I have got everything across I wanted to.
Keto has given us our girl back but reducing all her triggers through all the above therapies has also helped significantly too.
In writing this all down I want to leave a few things with you.
Hard work can pay off.
Our children are not just children with Uncontrolled Epilepsy they are whole children who sometimes need other interventions.
Don’t think complaining about your child’s situation and not doing anything to help them is going to work. Interventions are time consuming and hard work for all.
I know your exhausted but even the littlest things can make a difference.
Read and Google, read and Google learn as much as you can about your child’s needs it will make you a better advocate for them.
Our children come first so how ever much a pain in the butt that second therapy appointment on the same day is don’t complain because your child is doing it twenty times harder than you are.
Find people who have used interventions with their child they will become your mentors or help guide you to the right type of therapies. Thank you Jade for being my mentor xo
And like I always say never ever give up, there is always hope and things can change for the better.
Ragdoll Mumma Zoe