Anyone travelling on the "my child has a difficulty" road will know that accessing support is patchy at best. Parents have to be dedicated and persistent in their accessing services role in order to make any headway. Progress is generally slow, intermittent, confusing and frustrating. As a parent you have to be the expert before you see an expert otherwise you run the risk of being fobbed off or branded as a neurotic parent or, even worse, being labeled the actual problem itself. When, as in our case, your child is able to present themselves well at school it is a challenge to describe the child you see at home when this is the polar opposite of their experience of them.
This week we've had appointments with our paediatrician and also with the generally illusive CAMHS (Child and Adolescent Mental Health Services). Appointments are like buses it seems, you wait six months and two and a half come along at the same time. Both brought frustrations and meant Katie missed chunks of school for little gain. After trialling both Ritalin and Strattera and discovering that, like many other children with FASD, they had no effect on Katie other than to give her awful mood swings (Strattera) we had the news that there was nothing else our Paediatrician could prescribe for Katie. Don't get me wrong, I'm not some drug hunting wild eyed parent seeking to medicate her child unnecessarily. I've had enormous reservations about giving a young child medication but after the success of the melatonin we wanted to see if we could help Katie just calm down from a sensory perspective. Nothing is worth the mood swings she experienced though. When she started to refuse to take the Strattera I have to admit I didn't push too hard for her to continue. They took a good while to wear off as well which was perfect timing for Christmas!
Our next port of call is CAMHS. I had an appointment there about six months ago and was told we would be referred onto a parenting programme for children with ADHD. This is run by a service external to CAMHS so my understanding was we needed referring by an agency. Oh no, it transpires that we could have self referred six months ago and no referral has been made (do CAMHS actually ever do anything?). I re-read the letter I was sent after the appointment which mentions the service but at no point does it say we should refer ourselves or provide referral details. There's another six months wasted then! I've since contacted the agency to discover there's a waiting list of at least six months so effectively it's a wasted year in total. It was an uncomfortable experience at CAMHS, last time I went alone but this time I took Katie. Talking about Katie and her behaviour with her there made us both feel awkward. Katie told me afterwards she doesn't want people knowing about what goes on at home. I explained to her that we can't get help if we don't tell people what's happening. She hates people knowing about her behaviour though. She can be mid rant as we leave our house and will stop the second she steps outside the front door, smiling and pretending nothing has been happening. I suspect other parents reading this will understand her need to fit in and not draw attention to herself. I was as honest as possible with the therapist and watched Katie show her displeasure in the drawings she distracted herself by doing. I felt uncomfortable because, despite being a trained counsellor myself, I still hate the whole listening and not responding schtick of the psychodynamic approach. It pushes my insecurities like an internal nuclear button and I always end up talking too much to fill the silences. I sat there feeling all my anxieties about being a crap parent surfacing and spilling over, feeling as exposed and vulnerable as my daughter clearly was. It's a leap of faith really when you bare your soul. The question is always hanging as to whether it will be worth it. Will the gain outweigh the pain? Will the story be understood? Is help at hand? Is someone actually going to offer us some support?
When our hour was up the therapist said that she felt we would benefit from going on the afore mentioned parenting course. I'm happy to go but it seems their answer to everything is a parenting course. Katie has specific issues impacted by her ARND that are similar but not exactly like ADHD. Her hyperactivity is caused by external sensory overstimulation not by an inner overstimulation. She suffers from low self esteem and anxiety. Anxiety is common for children under the FASD umbrella. How we manage it is still a mystery to be solved. One thing we have been offered (if we're considered suitable) is a support group that is being set up locally for the parents of anxious children. I'll jump at the chance suspecting that, as always, other parents will probably be more help than anyone wearing a professional cap. Katie has been offered a "few sessions" with the therapist. I'm a little unclear as to what is going to happen in these other than it's to help with her anxiety. Katie is going to see the therapist on her own. This makes me wonder whether this is a good idea. I spent time working with older children on their own but Katie is only 9 and I'm concerned about how she's going to feel and also whether she will be able to talk honestly or even show her insecurities. Her hyperactivity was well displayed in the appointment but her aggressive reactions mostly saved for display at home. I was reading recently that the practice of seeing adopted children on their own was being questioned as to it's efficacy so I might chat to other adoptive parents and contact CAMHS prior to the appointment to ask more about this. I would appreciate any feedback or suggestions from other parents or professionals reading this post.
The reason for saying two and a half appointments earlier in this post was because after 18 months of chasing we finally have an appointment with the Educational Psychologist in March. I chased the referral up with the Head of Katie's school last week only to discover she thought I was making the referral myself. Oh if it were that easy! Are the budgetary implications really so great that nobody wants to refer? CAMHS wouldn't! GP wouldn't! Adoption Support Fund doesn't fund it yet it is one of the most key pieces of information to gain for a child with any learning challenges. So, finally we have a date in the diary. At the moment I feel like all I'm doing is pushing, pushing, pushing for referrals but I'm so concerned that if we don't get to grips with all these issues now we will lose the moment to act and as quick as the blink of an eye she will no longer be in Year 4 and will start secondary school and get lost in a world where student support is very hit and miss and highly dependent on good internal communication and the willingness for a staffing body to work together in the interests of the child. My pre-adoptive parent professional role was offering student support in secondary and college settings and I know first hand how challenging it can be to coordinate support for a pupil. Trying to explain FASD so far has been 5 years of my voice being unheard because Katie presents so well at school. It is only in the past few weeks that the gaps in her maths learning and comprehension are finally being understood and explored. I've been beating the maths deficit drum since Year 1 evidently having silencers on my drum sticks. Maybe a pair of size 11 hobnail boots would have been more use. Still we're getting there (I hope). Slow steps but at least they're moving forwards.
We're having some success at home with the ongoing zero tolerance policy. I've put house rules up on the wall and any breaking of the rules has a swift, relevant, consequence. No warnings. No opportunities to argue or negotiate terms are given. Katie is on an ongoing iPad ban until she stops swearing and hitting for a month. I'm quite liking this ban as she's going to sleep earlier now. The longest she's managed so far was 6 days. I'm holding on firm and resolute on this one. A week of no swearing earns her a few goes on Slither.I.O as a sweetener and encouragement but that's it. She seems to be watching rather a lot of Sam and Cat and Victorious instead but also she has discovered a love of reading which highlights her new ability to spend time alone and also sit and concentrate for longer periods of time which is a fantastic step forward and highlights more brain development.
So all in all we are making some progress. I just hope these appointments are worth it for all of us.