The beginning… Sounds ominous doesn’t it! I’ve decided to call this entry ‘The Beginning’ for several reasons but mostly because this is my first ever blog, and because we are at the start of our journey into getting a diagnoses for my son. J, is now two and a half but I would like to give you some background up to this point.
My pregnancy was text book. Apart from morning sickness at the beginning and migraines, everything went great and I loved it! When I was nearly two weeks overdue, I was induced… it didn’t work. After two days and two lots of induction drugs, I was taken up to delivery for them to artificially break my waters and put me on a drip to speed things up. After 16 hours, I was taken for an emergency c-section as there were complications and although this went wrong and I ended up with torn ligaments, my beautiful healthy baby was born (although this did leave me with PTSD – but that’s another story!)
After recovering physically from the c-section, I loved my maternity leave. I am not saying that having a young baby is easy but I loved being a mum. It was something that I was born to do. I returned back to work part time when J was 9 months and he went to a nursery as we don’t have family that live close by.
Looking back, it’s hard to say when we started to notice that J was ‘different’. From about 7 or 8 months, his sleep still hadn’t settled down and my mum kept telling me that she was concerned but so many people I know were still having difficulties with sleep so we didn’t think too much of this. The poor sleep continued up until very recently and J would wake up screaming in the night, waving his arms around and was inconsolable. We put this down to night terrors and something that we were intending to bring up at his two year check. It was horrid to watch and difficult to deal with, not knowing what was the best thing to do to help him.
Around this time, we also stared to notice that J got fixated on certain things: lights, switches, door handles etc. Again, this isn’t something that really bothered us or caused us concerns, until one weekend. I remember very clearly speaking with my husband about it. We had been on a walk and, as usual, J had found a little mound that he enjoyed walking over backwards and forwards. He would do this for about ten minutes and then we would normally pick him up and walk away from the mound and he would normally get upset but then would walk again as normal (until the next mound!).
This day was different. We had gone for a walk because J had been very grumpy at home that morning. He had been wanting to flick switches and play with door handles all morning and had become very, very grumpy when we tried to discourage it! We went out to change the scenery as this normally helped us all! After watching J walk backwards and forwards for at least ten minutes and noticing that he still wasn’t bored, I told my husband that I was worried. We talked about it and agreed that we were both a little concerned.
The next day at nursery, the manager came to see me when I picked up J at the end of the day. She gently told me that the nursery had a few concerns about some of his behaviours and asked me if we had notice these fixated behaviours at home. I was devastated but also relieved. For ages, this had been in my head and I realized just how long I had been denying the concerns to myself. It felt good to talk about things with the nursery although I was crushed that our little boy wasn’t quite the same as the others.
After the discussion, it gave me the confidence to go to the doctor and ask for a referral to speak with a doctor about my concerns. I went by myself as my husband was at work and J was in nursery. I knew it was going to be an emotional discussion and I didn’t want J to see me upset. The doctors attitude was poor. Her response was that my son was not yet two (he would be two the following month) and that nursery were probably over reacting. I told her about the sleep issues and repetitive fixations and explained that I wanted to speak to someone about it. Eventually, after I insisted on the referral, she agreed.
After a few months of waiting, we eventually saw a doctor at the children’s hospital. I went armed with letter from nursery confirming their concerns as well as my own. This doctor was better. He listened and understood our concerns and agreed to refer us to a special needs assessor who would come and visit our little boy at nursery and watch some of the behaviours that cause us concerns.
The initial visit was last week and I was told that there will be a home visit later this month to get further information and then 6 visits which start in September. So far, we have been on this journey for 7 months. My visit to the doctors happened in January. It is now July and in September, we will finally have the assessment visits that we asked for. Its been a long journey so far and we have only just begun.
I guess the point of this blog is to document our journey. I know there are probably thousands of parents that have gone through this process and thousands more will go through this process. I hope that this blog will help others who have yet to go through this journey or that we can go through it together. I also hope it will give me some comfort too as I hope other parents going through similar journeys will come forward too.
So I guess this post has been long enough and I won’t pad it any more. I’ve tried to give the background so that you understand more about us. The next blog will be shorter and will be more focused about our journey.
Thank you for reading