Saturday, 27 March 2010

D-Day




Finally at age 7 and after 2.5 years of assessments, support in school and varying meltdowns we have been given a diagnosis for J. That diagnosis is Autistic Spectrum Disorder with co-existing ADHD to add to the fun. While getting a diagnosis is a relief and a reason for all J's little quirks it was also a shock. The confirmation of all the suspicions I have had (and hoped were incorrect) was like a punch in the stomach and only 48 hours later do I feel like I have begun to absorb it all.

J is autistic - not high functioning autism or Aspergers as I was suspecting because his social skills are actually not advanced enough to meet the criteria for those - that was the punch in the stomach.
Recently in school there have been several incidents which have culminated in J assaulting other children much to my sadness and disbelief. There was also a dreadful meltdown during the car journey home one evening after I commented to J that he looked tired and shouldn't use the Wii that evening. J raged and kicked and screamed then finally took a shoe off, held it to my face screaming "I hate you - do you want a piece of me"? This is a line from Toy Story, a film not known for it's violence and I was shocked by the raging.

After J was born I suffered severe post-natal depression which made life very hard, I was constantly tired, had no desire for life and caring for J was difficult. Recently I had begun to wonder if J's problems were down to my post-natal depression. There has been various research looking at how PND in mothers impacts upon babies and especially baby boys. This was enough to make me feel desperate and to start a bit of self blame. I had even got as far as making an appointment with my GP to discuss a referral to the children's mental health team. I reasoned that if my PND had impacted upon J negatively then the attachment must be all wrong and that this was my fault. I even attended a lecture about "Disordered Attachment" and listened anxiously to all the signs of good attachment as opposed the disordered attachment. I was relieved to note that J and I ticked all the boxes for good attachment but still felt my depression must be partly to blame.

On Thursday 25th March we attended the appointment at the Social Communication Clinic, to be honest I wasn't sure what to expect. I thought it would be a short appointment with the promise of further assessments and follow ups. In fact the clinic already had the previous assessments done in school by the speech and language therapist (SALT) who specialized in social communication problems. A different specialist SALT was present at the appointment along with a paediatrician and a worker from SNAP (Special Needs And Parents). The SALT took J off to play some games with him - he went willingly and during this time the paediatrician took a long and detailed history form myself and J's Daddy. We talked about everything, all the quirks, the prolonged headbanging as a toddler and small child, the obsession with washing machines as a small child, the problems in school, the hand flapping, J's distractability and attention problems, the rages, the lack of eye contact at times. The paediatrician asked if J had been overly interested in Thomas the Tank Engine - a question I was at loss about until I read about the love autistic children often have for Thomas.
Finally after nearly an hour the paediatrician asked us to wait outside while they discussed the outcome of the assessment and also the observations of the SALT who was still playing with J. It was then that I realised we would actually be getting an answer (possibly) that day.
We waited anxiously - part of me wanted a diagnosis of high functioning autism or Aspergers as it would provide a label to hang all J's problems on, the other part of me did not want that at all - no parent wants to think that their child who is already finding life difficult will continue to do so.
J joined us happily and talked about playing games, he appeared to have enjoyed himself. Finally we were called back in, I left J with his Daddy in the waiting room I wanted to be able to hear without interruption. J was not happy about this so squatting down to talk with him I tried (and failed) to get eye contact. Finally J accepted that he would stay in the waiting room and as I walked down the corridor with the paediatrician she asked me if I had noticed that J had not made eye contact with me but had looked beyond me. I knew then that we would have a label for J's behaviours.
The SALT asked me how I coped as she had spent an hour with J and was exhausted. Then the paediatrician told me that in her opinion J had Autistic Spectrum Disorder and probably also had ADHD although she would need to do more assessments to confirm the ADHD. Apparently ASD rarely exists as a stand alone problem and there are usually co-existing problems. The paediatrician suspects that in J's case this co-existing condition is ADHD.
The worker from SNAP stepped in to say that she was impressed by how we had coped with J and it appears that far from causing J's problems he is all the better for having had good parenting (Mummy will take a little pat on the back and a sigh of relief here). SNAP will be making contact with me over the next week to arrange a visit to their centre. They will support me in applying for DLA, they will support me with behaviour management.
The paediatrician says she wants to see J again in six months and although I am still shell-shocked it feels a relief to have an answer finally. Now the fun begins - the pressure will be applied to the local SEN board for a Statement of SEN and I am going to push them for full-time one to one support in school so that J is always supported and helped.
I am proud of J and I love him so much, despite such difficulties he is on the whole a gregarious and sociable little boy

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