Lachlans early years assesment was at the end of November 2012, I was led to understand that referrals would be made to the Speech Thearapist, Occupational Thearapist, Home Visiting Teacher, Borders Autism Team and Disability Nurse and that we would start appointments with these specialists in a matter of a few weeks. A report from the assesment was also to follow. I felt relieved that at last help was meant to be forthcoming.
That relief soon turned to anger and frustration, appart from our health visitor and my older children’s school link worker we were left with no support. It was so soul destroying to watch my wee lad suffer, clueless how to make it better, knowing others did, having to live with the questions from family and friends unable to answer them, having questions of our own and no one to ask them of, there were days I nearly ran away. I had it all planned in my head where I was going and how to get there, I couldn’t do it, couldn’t do that to Ian and the kids whom I love so much. I made phone calls chasing appointments always to be told there were waiting lists, I cried for hours after one call where I was told we would be unlikely to be given any appointments before February that was four months away!!! I begged our GP and health visitor for advice, the common reply was “this is where you need specialist help!”
Harder still to bear was the amount of times we were given appointments which raised our hopes that help was coming only to receive a phone call sometimes at less than an hour before we expected the specialist to arrive to say they were not coming, knowing that it unlikely we would be offered another appointment any sooner than 6 weeks down the line, that often plunged me into free fall, we even had one specialist come out do an assessment arrange to return with a report a month later only for her to leave her post, never to return and no report ever written.
I called the education department to flag up Lachlan as he was due to start playgroup in January and I wanted to make sure support would be provided, or if more appropriate a place in a specialist setting, I was saddened to learn that as Lachlan would not be 3 until June there was nothing in terms of support we could be offered.
I spoke to several so called national charities, none of which offer any services or support in our region, I thought that madness you can call yourself Capability Scotland, National Autistic Society or Autism Scotland, yet be under no obligation to offer services in all areas, being in a rural town there was nothing by means of support or information providing. Mindroom were the only ones to try and help us.
Finally after just about surviving Christmas we had an appointment to receive the assessment report, I must have still been too numb because although I read the report then and several more times in the following days it wasn’t until reading it 5 months down the line did I realy take it all in, we waited another 2 months for speech therapy and home visiting teacher to begin, 9 months for Lachlans Autism assesment and a full 11 months for a full OT assessment. We are still waiting on a genetics appointment and blood investigations. We have been without a paediatrician for 11 months as the locum covering the maternity leave of our own paediatrician didn’t have a clue when he saw Lachlan in February, he hadn’t even read Lachlan’s notes, we went with a list of questions as this was our first contact with paediatrics since October, every question was answered with “I am sorry, I don’t know the answer or I can’t make referrals out of house” We were asking for help to chase the promised services and if they were not available locally then could we be referred somewhere that we could access them. It took two letters from our MSP to get the services Lachlan so desperately needed it shouldn’t be this way, I have no doubt in my mind we would still be sitting waiting on some services had I not fought for them, I kept pointing out that we were not simply numbers, that in the middle off all the mess was a beautiful, sad and lonely little boy who deserved far better than he was being offered. I didn’t want to here or care about budgets or staff shortages, there always seems to be money for drug addicts and drunks in need of treatment yet my innocent little boy who has never hurt anyone had to wait. I just wanted to make life a better place for Lachlan.