Diary of a mother:
All has been fairly quiet lately for us, but as the old saying goes 'when it rains it pours' and boy, have I just had a rainstorm!
We started music therapy last term at school. I was a bit unsure, not knowing all his past and also knowing his very different reactions to music already – also his undiagnosed sensory issues but we decided to give it a shot... Let’s just say it didn't go to plan. He suffered from hallucinations and huge epic breakdowns like no one has ever witnessed before. He believed for days that a woman was trying to kill him and as you can imagine his behavior has been spiraling out of control – especially with myself and his female teachers. Due to all his unfortunate reactions, the music therapist referred him to our school play therapist. Again my son can't play, so I was dubious but as always I want what is best for him. Therapy started and after the first hour I was called in to discuss him. I explained about his past and was delighted to find out that the therapist had clearly done some impressive research into FASD. I don't know about you, but I sometimes find that so many professionals don't want to know about FASD, roll their eyes when I try to explain his behavior is down to irreversible brain damage or just dismiss this invisible disability. So, this was a complete breath of fresh air. She also couldn't believe the lack of support we are receiving for him and how some services involved are clearly not fulfilling their duty of care towards our son. She explained to us how she was definitely seeing a previously abused child in front of her – one that clearly is displaying huge auditory and visual issues, as well as major signs of schizophrenia.
I came out of the meeting both ecstatic that for once I didn't have to explain FASD and also heartbroken that we may be facing other diagnosis for him. Anyway, sadness soon turned into forcefulness and I started making phone calls. First on my list was Occupational Therapy (OT), "I'm so sorry Mrs. Williams we are fully booked and unable to visit Liam until the next school year." Well, my response was along the lines of 'waiting over 6 months for a school visit to access him wasn't acceptable and could I be given the address to make a complaint'. Would you believe it, within the hour we were booked in for the following week and a massive apology saying the receptionist was incorrect.
Next came social services, I've been begging for post adoption support to help us for months, asking for an assessment of need, so an application to the adoption support fund can be made. After yet another promise of a call back was made and one wasn't received, I made a stage one complaint. By the next evening I was assigned a social worker, I'd had three calls and an appointment for an assessment of need. Hallelujah! To top it off two out of four points were upheld in my complaint and we received an apology which was all I ever wanted.
Next was the pediatrician, who again, amazingly agreed that more needs to be done. They are now reviewing him and putting plan in place for further testing (I’m starting to think by now all these services are colluding behind my back telling each other not to annoy me any further).
Then boom, Education, Health and Care Plan (EHCP) lands on my door step, by now I'm doing a little victory dance in my front room, congratulating myself on how much I've achieved but also how annoyed I am that this is how you have to do it. We shouldn't need to complain to get what our kids deserve. I shouldn't have to constantly justify what FASD is, what it does to our son and our family. I shouldn't have to get to my angry stage to feel the confidence to approach all these services and I wish, I so wish I could do more to help others to get what they so deserve.
The only way I felt I could reach anyone was to write this article this week. I want you to all take some self-care, refresh yourself and tackle things head-on. I am not the most confident mum; I feel judged almost daily and some days it’s a pure effect to get myself out of bed. I'm on antidepressants. I feel judged that I only work a part-time job and still struggle to do my son's paperwork. I guess what? I shouldn't feel this way. I need to remember I am a strong woman. I am not perfect but I am me. I'm doing my best. I work part-time because I enjoy it and it’s my time off from being a mum. Actually getting out of bed may be my biggest achievement somedays but that is ok and I shouldn't feel judged. I am perfect in my own way, as is my perfect FASD family. Stay strong, find the strength when you can to tackle the hardest bits. Don't for one second disbelieve in yourself, you can do it!