First day of college. July 2022.

Darling girl left school last December 2021, aged 18. She had missed most of her education due to years of illness, but I feel lucky we flew under the radar and were not prosecuted for her not being able to attend as kids are in other countries. Today she began a new chapter, a course in creative media, here in the city, just next door to school actually.

When her alarm went off this morning I was stunned and pleased. Worried and delighted. Emotions for me, mixed, contradictory. On the one hand, she was organising herself and taking another step towards adulthood and nest flying. On the other hand, living with invisible, mental disabilities, I knew, from past experience and a deep knowledge of how her mind works, that every tiny step to just get there on time, was going to be excruciating for her, and me.

She had signed up for the course at the beginning of the year. However, Covid rules did not allow her to attend back in February, when the course was running in the afternoon. Having had a 6 month wait, during which time, we have worked so hard to stabilize anxiety and improve her OCD, now the second intake of the year, there is only one class running and that means an 8.30am start. The challenge of this is immense. Her OCD and PDA dictate everything and as such, she never knows when she is going to get stuck in a loop, rendering her paralyzed to just get on with things. The immobilization of normal abilities, such as putting on a coat or carrying a bag, the intense intrusive chatter of unwanted, tormenting thoughts over and over playing in the background, the surging and soring physical feelings of anxiety, blood coursing, head pounding, heart racing, noise interfering, other people triggering more of the same and more and more. It wont stop. Trying to get control to move one foot in front of the other and stop the thoughts, trying not to look crazy, trying not to upset or show others how messed up it is in her poor wee head. Knowing that others will never fully understand just how hard things are or that she is not doing these things, these behaviours through choice or planning.

Any yet she goes on. She is a fighter, a warrior, and I will always admire her, love her, worry for her, feel everything. I wish so much I could take away her curse. But I know these are the cards we have been dealt and we must play the game of life as best we can.

This past 6 months, life has been good. A lovely boyfriend, adventures and happiness. It did occur to me today though, that all of this has been achievable because she has had the freedom to wake when she wants, do exactly as she wants, when she wants to. Removing all ‘you musts’ does enable the PDA to sit quietly and be the creative, magnetising, fascinating backdrop of who she is. But as soon as those musts come in, it is indeed like the draw bridge to happy easy life is up and once again, she is trapped on one side, wanting to run across the bridge, but seeing the vast, deep water and danger between what is wanted and what says no.

The college are very used to creative people from all walks of life. They have offered additional support etc and OCD is a well known condition. I sent them some PDA info, but once again, we are out here, never really knowing how to articulate just what is PDA. It just cant be summed up in a few words can it. So here we are, adding to the pool of voices in the hope that others will find our words and one day, PDA will be understood and sympathised with for the difficulties those with PDA have in every day situations like learning and being somewhere on time.

There will be so much for her to take in today. Rules, new people, having to find a space where her OCD doesn’t kick off. Looking for an escape route. Its hard for her to sit down. She will worry that she might have to stand up through the lesson. If she is asked to do something, PDA will step in. She might come out with excuses and be judged the wrong way, as someone who doesn’t want to join in or be helpful. Her senses will be the highest alert level, fight or flight mode, her body will be anticipating danger on every level, out of proportion to the reality of the threat. She’s not shy to speak up. One good thing I guess. She can hold her own and she is charming, resourceful, persuasive, magnetic, likable, so funny, smart, quick witted and a great artist. Her talents and charms will balance out the torture she hides so well. I know she will be OK. Until we have to do it all again tomorrow.

This morning, we left early, so pleased to be in time and out of the house, we went to the mall across from college and shared breakfast together. But as the time grew closer for her to go in, her OCD ramped up, battling with PDA that was saying, no not yet, just a bit longer, don’t move yet. She insisted on complete silence from me for about 45 minutes while she checked over and over her thoughts, seeking relief as one would see with perhaps handwashing or counting, but hers are private rituals in her head. I wanted to cry, to throw myself on the floor and scream. I knew I must steady my own breathing and sit so calmly, just being the light and the anchor. Its like an endurance, a torture exercise.

In the end, she made it through the doors and I could see her mingle into the foyer with the other students. A memory came over me from when she was 5, my little girl, I felt the same as I did when I dropped her at her first day at school and I did them same as I did that day too. I drove round the corner out of site, pulled up, turned off the engine and cried my eyes out.

Hopefully she will call me soon.

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