The opening title isn’t my quote but it is definitely something I relate too , Parenting Oscar is a rollercoaster, and the bad days for him have an effect on me ,as I’m back to the helpless but in control mum, that has to juggle parenting of three children ,and work and although we do have medication now which in truth has changed his tolerances for the better , we do still have some days were he is so anxious ,we are on egg shells all day , at its worst he can’t even get dressed, your just to close, and he hasn’t the skills to dress himself yet , on those days from the get go you are losing! But they are rare now and I hope that as he matures this will improve more and more .
Oscar has developed much better tolerances engaging in therapy ,and if we are consistent this will continue I hope , reflecting back on probably a good 12 months of non engagement in therapy and in home routines, and us really trying to communicate with him through play and intensive interactions , with us almost at points just defeated ,and literally working all day through one meltdown onto the next, with an extremely distressed child that would be so anxious just from getting up in the morning, that would attack on waking , attempt to head but you ,sometimes actually head but you, to get away ,to run away to where he didn’t know he was going , but just had to run , to almost dropping him down the stairs as we were trying to get him downstairs to begin our day, of work and school for the other children, to begin the day like that after 3 hrs sleep!!!!! some nights, then being referred to Attention Autism for some crisis intensive interaction sessions ,where he would attempt to run through the doors to get out .
It was within one of these sessions that Oscar had his first noted seizure, after physically attacking the lady , pulling her hair taking off her Glasses and attempting to break them, and kneeing her in the face , through fear ,that we got referred back to his consultant with a report of the incident, as they were becoming more regular that we were given some medication to help lower his heart rate and reduce anxiety .
After this he did start sleeping better and the distress reduced , we than began building a bigger support army ,and I think once he was medicated and the calmer behaviour came I made a promise to myself to never let things get so bad again, I wasn’t going to be able to manage Oscar long term without outside help, I had to start being honest with myself and realise that this kid was a big deal , despite some experience with difficult behaviours in children through my 16 career with looked after children , oscars had peaked , it had snowballed , but I had got sucked in and it was only when it relented ,I realised I had to face the facts head on and let people in because ,I had to face my fears , which was an older Oscar who displayed this behaviour and lashed out , when I look back I just think how I didn’t actually have a breakdown is beyond me , but thankfully there were services there to catch us when we needed it ,and start to piece together for us ,away of working through his anxiety to a level we’re normal life could resume , to some extent , we’re still probably dysfunctional but just enough to give the kids a sense of humour !
looking forward now ,as your aware I have started Born Anxious, inspired by Oscar , organic label free clothing that carry’s awareness messages on , its starting to become more than that , it’s a support network , I’m finding we are all bound by the same restrictions and worries 💙
I attended festability over the weekend a music festival for disabilities, this was the most inclusive event I have ever been to, anyone who attended had all the experiences of a music festival, with adaptations to allow for sensory needs , learning difficulties ,Autism and disabilities , in truth it was therapeutic for me to be able to talk to parents of older children on the spectrum, to share there stories with them, to learn from them it was just amazing to know that positive outcomes always have a backlog of struggle , to see so many parents and caregivers engulfed by supportive services that help them, aid them, support them is amazing and it made me happy, and I just thought I must let these services and networks into our lives, and share my fears with them ,for our outcome long term to be positive .
I woke up on Sunday feeling really content with our journey so far ,we must be on the right track, I feel things will be ok in the end , the help is there I’ve seen it 💙💙💙💙and at those times I feel helpless and drowning, I’m going to tell myself if it isn’t ok, then it isn’t the end 🌈
H is an autistic adult who came to help and support Born Anxious at festability 💙