*I apologise in advance as this is probably going to be a self indulgent incoherent piece of drivel, but here it goes.
I have been a parent for almost nine years. I am currently starting my fourth parenting journey, with our baby boy Ezra, who is just four months old. But Something has changed. I think I have broken my ‘parenting bone‘, let me explain.
When Oliver was born, it was amazing. He was our first child and it was all new and exciting and he was perfect. Obviously we didn’t know what we were doing, but we seemed to do OK, our boy grew and thrived.
When we had Zachary it was so special. He was our rainbow baby, the calm after what had been our storm; four early miscarriages. Although we went through a difficult patch we were able to get back on track.
When we had Darwin, it was interesting, he was wonderful. Our experiences were different. We were just at the point of going down the Autism diagnosis route with Zachary, which in all honesty took up more time,energy and emotional capacity than I care to really remember. Also this was our third time, we were Pros.
Having Ezra has been both interesting and hard on many levels. He was our surprise baby, and what a wonderful surprise. He is more than I imagined he could be. He has bought real happiness and a sense of calm and completeness. I no longer desire to have anymore children, which is a feeling I never really thought I would experience, but that yearning has gone. So, we have four boys in a two up, two down property. Space is tight [We will have moved by the time this is posted]. For now though, it is what it is. Zachary has his needs due to his ASD and SPD [Sensory Processing Disorder], but we deal with these pretty well. We have been dealing and adapting to these for five years now. But what has happened *As I write this, I can’t hold back the tears, its the first time I have cried about this and I cry for a while, horrible, ugly crying. The kind when you feel like you won’t ever stop. What has happened involves Darwin. Darwin has a few issues. He has bilateral glue ear and at three years old has already had surgery to insert a grommet. His ear is constantly leaking a snot like discharge. He has officially been diagnosed as having a moderate to severe Speech and Language Delay, which is not linked to his glue ear. He doesn’t qualify for speech and language services, so I am sent home with sheets of paper with activities to do with him. I am told that he needs visual ques and reminders. I am given no resources to provide these for him. We are pretty certain Darwin has Sensory Processing Disorder like his brother Zachary, as are his nursery. He certainly has sensory issues. At nursery they have an array of items and strategies in place for Darwin, including a cuddle belt, weighted lap blanket and a sensory box. He has something called TDS, Toddler Diarrhoea Syndrome, Which means he doesn’t do fully formed stools.
Darwin is very different to how Zachary was at that age, He is fiercely independent, does not stop moving and, is completely motivated by his own agenda. I know that these are great attributes, but at three years old these affect his and our lives to the extend that they are now ‘officially’ cause for concern. Enough so that it warrants a referral to the CDC, Child Development Centre – the place that diagnosed Zachary’s Autism. No one has said that he may or may not have ASD or anything like that, but there is significant cause for concern. This fills me with dread, for the foreseeable future. Not because of a possible diagnosis, because that wouldn’t change who he is. It is because I know the fight that is coming. The fight I have already began fighting, although I’ve not really admitted it out loud, to get assessments, to get referrals, to get help. I remember it so well with Zachary. With Zachary I was that parent. I knocked on every door till someone opened it, I rang every phone till someone answered and I asked all the questions till I got the answers I
wanted needed. I was proud to be that Mum. I was praised for being that Mum. I was told Zachary wouldn’t have got half the interventions he had if I hadn’t been that Mum. It was easy with Zachary to be that Mum, I could see how much he struggled and deep down I knew it was Autism, although I doubted and questioned it, deep down I just knew. We are in a good place with Zachary, he is in a great mainstream school. They are fantastic at ensuring his needs are being met and they make every effort to understand him and to communicate and include me in his learning and development. I am seeing changes in his confidence, academic abilities and communication. I have just reached a point where I feel I can stop holding my breath and just breathe.
And now…Now we are back at the beginning of another possible Special Educational Needs journey, with another son and I have tiny baby who I just want to enjoy and a son who I feel I don’t really know or understand and worst of all I feel like I don’t know how to. I am so far removed from the parent I want to be its actually heartbreaking. I guess I have lots of emotions about the whole thing, mainly frustration and anger and a little bit of despair. I know we have such a long journey ahead of us, we have been told it is a minimum of 12 months till he will be assessed, although that may work in our favour as a diagnosis [if needed] is more likely to be given at four than it is at three. during that year we have to try and get him as much help and support, gain as much knowledge and understanding about Darwin and strategies about him and his needs. It will mean lots of phone calls, letters, appointments and paperwork, oh the
fucking paperwork. Ask any Parent of a child with any kind of additional need, the paperwork is enough to make you want to scream into a pillow on a regular basis.
The question I have been asking myself, is do I have the strength to do this again. When I ask myself this, I feel like crying, what kind of parent asks this? A parent who feels broken. A parent who feels like she doesn’t really know what she is doing. A parent drowning in expectations, reality and paperwork. I feel something that I don’t know how to put into words. I feel for my son. I feel mad that he is struggling and I haven’t been able to put on my Big Girl pants and just get the
fuck on with it. I feel angry and frustrated that I get so angry and frustrated, that it has taken me so long to admit, that this referral is needed. I feel like I have failed him. I know many people will say I haven’t but it is how I feel. I feel like I have broken my parenting bone, but its time…to put that bone in a cast. It’s time to put on those Big Girl pants and to rise up from underneath the paperwork and guilt and become that Mum…Again.
Thanks for listening to me whittle on. I hope this will help anyone in my situation who is feeling like this, to understand it is normal. I hope it will help people who know me to understand although I wear my brave face and my smile inside I am struggling, but I am still OK. I, we will come out the other side.
♥ Feel free to share your stories with me, how you felt/dealt when a second child was considered to possibly have additional needs and how it affected you. Also if they did receive a diagnosis how did it feel compared to the first time round?
Much love and many thanks